Featured Angel

Note: The Featured Angel’s intent is to give our Rett community an introduction to a few of the Rett angels for whom we are fighting to turn Research into Reality. Send Featured Angel submissions to admin@rettsyndrome.org.

 

Featured Angel: Jessi Watts

Hi everyone!  My name is Jessi Watts and I live in Decatur, AL with my mom and dad.  I am 14 years old and my favorite things are French fries, VeggieTales, music, and WATER!  I love baths, sprinklers, swimming....anything that gets me wet and lets me splash.  I attend Oak Park Middle School.  I love acting silly with my friends, cracking jokes with the help of my Tobii, and riding the bus.

It took my parents a long time to figure out what was making my life so hard.  I was diagnosed with autism when I was 2, but it didn't take long for my mom to figure out that something else was going on.  She tried for several years to get any and all of my doctors to look deeper into why I wouldn't use my hands and why it took so long for me to walk.  My mom read about Rett and mentioned it to my doctors but no one would listen to her.  

In 2008 we moved from Tennessee back to my mom's hometown in Alabama.  After a couple of years, we had to find a new neurologist.  In 2013, during one of my check-ups, my neurologist asked my parents to participate in a genetic study.   My parents said "Just show me where to sign!"  and the following February doctors told my parents that I had Rett syndrome.  

My mom tells people that finding out about Rett is like "no longer throwing punches in the dark."  Now I am able to understand why my body doesn't cooperate with me, and it helps everyone around me understand how to help me SO much better!  

Right now I am participating in the Neuren drug trials at the University of Alabama.  I really like that I get to see Dr. Percy and Ms. Jane a lot, and my mom says that I am very brave.  There are a lot of girls and their families who have to be brave, braver than me every single day.  Together, we will find a cure.  I just know it!

 

Featured Angel: Emmaline Glick

Emmaline’s proud sister, Taylor, age 14, created a beautiful documentary, Loud Silence, about Rett syndrome for the Tribeca Film Institute’s Summer Art Academy in NYC. Click here to watch Loud Silence.
 
“Emmaline is our hero. We have seen how difficult life can be for girls and women with Rett syndrome - and we are often awed by how brave she is in the face of these difficulties- and that she still goes through life with a smile and a laugh.
 
When she was an infant she received a blessing in our church that said she would have a cheerful disposition that would permeate and uplift the rest of the family. I think this has been true - while we experience great sorrow at times over her diagnosis, we also experience great joy by having her as a part of our lives.”
 
Emmaline is participating in the Rettsyndrome.org funded clinical trial at Boston Children’s Hospital. David says this about the participating in the clinical trial, “From the moment you get the diagnosis of Rett syndrome, you hope for a treatment that will restore the future you had envisioned for your child. This trial feels like a step back towards the life we had imagined for her.”

 

 

Featured Angel: Zoey Adair

Zoey is 2 years old and received a diagnosis of Rett syndrome when she was just 21 months old.

Since very early infancy, Zoey has had a smile that can light up any room and an infectious belly laugh that you can't help but laugh along with. She has always had amazingly expressive eyes that often have an ornery, sly, devious look that makes you wonder just what she is thinking. We have memories of her as a one year old laughing hysterically at waves crashing on the beach, and wanting to be the star of the show at every restaurant, trying to catch the eye of anyone who would look her way, so that she could flash her smile or one of those looks with her eyes.

Zoey appeared to develop quite normally for at least her first 6 months. She started physical therapy for torticollis early on, and some gross motor delays became apparent a few months later. When she was not crawling or saying any words at 13 months, we became more concerned and had her evaluated by Early Intervention and a neurologist, and eventually a geneticist. She did begin to make slow but steady progress with crawling and other gross motor skills. However, she began to show increasing red flags for autism and progressive difficulty feeding herself. After several tests and evaluations, we finally got the devastating news that the source of all of these issues for Zoey was Rett syndrome. As you can imagine, May 13, 2016, Zoey's diagnosis day, was a very challenging and heartbreaking day for our family.

Since her diagnosis, Zoey’s hand use has already regressed further. We are unsure whether this regression period has ended or if it will continue to manifest in other ways as well, but we are hopeful and are not giving up on her. She has 6-7 therapy visits per week and we hope to get her an eye gaze device to allow her to communicate. At this time, she is still crawling and babbling, but has not yet walked independently or talked. She is able to hold a straw cup for brief periods and feed herself certain foods with her fingers, but these are often not easy tasks for her, and she is beginning to have some swallowing issues. She can crawl very well and can also walk with a push toy with assistance. She is a very determined little girl, but we can often sense her frustration with hands that do not cooperate and an inability to communicate with us verbally. We know that she understands much more than she can tell us. She understands how her toys work, even if she cannot manipulate all of them by herself. Despite these issues, she is an incredibly happy little girl. Her favorite things to do are swing, play in the water, “dance,” listen to music, play with any toys involving lights and sound, and be outside, especially if it’s windy!

Zoey gives so much joy to our family. We have an amazing support system of family, therapists, and teachers who believe in her. We want to do everything we can to give her the best life possible despite this diagnosis, but we are extremely hopeful that a cure is coming for Zoey and for all of our girls!

   

Featured Angel: Blakely Goodman

Hi, my name is Blakely, but you can call me Blake. I am 5 years old, and I live in Nolensville, TN with my parents and little sister. I love being a big sister to my Andi Mac. She is constant entertainment and always manages to make me laugh. She likes to give me hugs, and I like to give her smiles and kisses. As a matter of fact, I love to give everyone smiles and kisses, and I am thankful that I can. This is one of the things I didn’t lose through my regression, so I am known to give them in abundance, especially when I really like you.

I was really confused when my body stopped doing the things I wanted it to. I was about 20 months old when the effects of Rett hit. I slowly lost use of my hands and then my words, and eventually I began holding my breath. Thankfully, I started therapy very young, so I was still able to learn how to walk; something I’m really proud of and thankful for.

It took my parents a couple years to get my diagnosis, and in the meantime an MRI revealed I had something called a Chiari Malformation - what my parents call enemy #1. At age 2.5 I had a neurosurgery to correct the issue, which really helped improve my headaches and balance. At age 3.5 a genetic test finally confirmed I had Rett syndrome, enemy #2. It was a tough diagnosis for my parents and family to handle, but as soon as they found out, they immediately took action. They were also finally able to explain to me what was happening to my body and that it wasn’t my fault. They told me about Rett, and that they knew I must have been so scared and confused when it hit, BUT they knew I was still super smart and had a whole lot to say! It was so nice to finally be understood!!

I go to a place called High Hopes for my therapies, and I absolutely love it there! I love my PT, OT and ST — they believe in me and also know that I am super smart. I also LOVE going to my school and my church Sunday school. I have been using my Tobii for about a year now, and my parents are helping train my teachers to use it too. It feels so great to be able to communicate with my teachers and friends! I am excited to begin Kindergarten with all of my friends this August. I also love swimming and riding horses, and my favorite movie is Frozen.

My parents started a Facebook page for me called “Join Team Blake”. They make every effort to raise awareness of Rett and they post videos of my challenges and my victories. I have the most amazing family and friends on Team Blake. They have all worked so hard to raise money for research and for my therapies/care. My parents tell me I’m the toughest girl they know, and that my story is inspiring others to change how they look at special needs kiddos, especially girls with Rett syndrome. I know that God has a good plan for me, and with every dollar raised, every fight won, and every prayer prayed, we are one step closer to a CURE! In the meantime, I’m gonna keep on working hard, living life to the fullest, smiling all the while…and giving lots of kisses!

 

 

Featured Angel: Emily Hughes

Hello world! We are so honored to introduce Emily! Em is three-and-a-half years old and she is both a younger sister to Maddie and a big sister to Reid. She is stuck right in the middle! Along with her sister and brother, Emily is the heart and soul of our family. She has such a sweet and delightfully infectious personality that not even Rett syndrome can take away.

Rett syndrome became a harsh reality to our family on August 11, 2015 which seems like ages ago! Whereas we are all so new to the "Rett World," we feel as if we have always been a part of the family. When we received Em's diagnosis, I would be lying if I said we weren't completely devastated. However, as a family, we decided that very day that we were going to do something about it; we wanted to make a difference in the Rett syndrome world!

Since then, we have gotten extremely involved with Rettsyndrome.org and Girl Power to Cure. We are even hosting our town's first annual Golf Fore a Cure on May 14, 2016 to benefit Rettsyndrome.org. We could not be more exited to spread awareness and raise money for this cause that is so dear to us.

Emily has already defied so many odds with Rett syndrome and we thank God for that every single day. She attends school five days a week and is just smitten over her teacher, Miss Laura! We keep Emily very busy between school and therapies. However, when we do decide to give Emily a well-deserved break, she enjoys watching Minnie (her all-time favorite girl), swinging, going for walks on her walker, and swimming in the pool (like every other Florida girl!). 

I must also say, we are so incredibly blessed to be surrounded by such a loving support system, our family and dear friends. There has not been a doctor appointment during this entire process that Emily's grandparents have missed. When we received her diagnosis, we all cried together and were there to encourage and uplift one another. Our friends have been equally supportive and that's something that we will be forever grateful for. We want to thank you ALL for constantly praying for Emily and for being her biggest fans, you are all the BEST!

 

Featured Angel: Siera Rushin

Hi, my name is Siera. I turned 28 this past January! Most people think I am only about 13 or 14 which I think is funny!

Rett syndrome entered my world around 15-18 months, mom couldn’t figure out what was going on—things I once did easily became hard for me.  Feeding myself and brushing my own teeth were huge favorites but all of a sudden my hands wouldn’t cooperate; I’d miss my mouth or drop my spoon or toothbrush before reaching my mouth; my words stopped coming and I even had a few days where I just wanted to be left alone! I was actually lucky in the fact we found a neurologist that had just moved from Texas to Michigan and knew right away it was Rett that was robbing the use of my hands. I was just over 2.5 then.

A lot has changed in 26 years! Mom didn’t have the internet to google Rett, there weren’t any girls in our area diagnosed with it and doctors were just learning it existed but didn’t have experience treating others with Rett syndrome. Doctors were even hesitant to write medical necessity letters because not enough was known about Rett syndrome. I remember mom getting a letter for my first communication device and it said it was unlikely I would live beyond age 5, seriously? I had too many things to try and too many people to teach about Rett to listen to that! I became stronger than ever and determined not to let Rett run my life!

I love going places and being outside is my absolute favorite. Riding a bike or sitting on a boat in the summer can’t be beat! Sitting by a campfire seems to relax me more than almost anything. The last few summers now I’ve gone to a few Detroit Tiger baseball games and those are always fun! Shopping, pedicures, massages and checking out good looking guys are more favorites of mine. Most days, I feel like any other 28 year old—but Rett syndrome determining my life was never an option.

Don’t get me wrong, Rett is a terrible disorder and it’s kicked my butt a few occasions—I’ve suffered from seizures, have had breathing irregularities for as long as I can remember and my heart has a condition called prolonged QTC. My hands no longer are able to grasp an object for very long and my words only come out once in a while these days.

I’ve been in some type of therapy since I was 3 years old—physical, occupational, speech, music, aquatic, hippo—mom’s made me do them all! I love to “hate” my therapists but I know they have helped keep me as strong as I am today!

In fact, I was strong enough to participate in the first adult clinical drug trial—the NNZ trial.  It was scary yet amazing. I’m already waiting for the next adult phase so I can participate in that one too! The clinical trial has brought hope Rett syndrome will be cured one day. Whether the cure comes in my lifetime or not is yet to be seen but I’m going to do whatever I can to help make it a reality.
In the meantime, keep an eye out for me at baseball games, the conference in Chicago this June and in July I’m heading to Alabama and plan on enjoying the sun and sand in Orange Beach!

 

 Gracie

Featured Angel: Gracie Sue Kobold

Hi, my name is Gracie. I'm an angel in so many ways. I could say a few words until the age of 2. My family could see that I wouldn⊃;t play with my toys and was not looking at them; my hands began to wring continuously and  I would have them in my mouth. I was diagnosed at Monroe Myer. I'm 7 years old now and can still walk and love to be in the kitchen when my grandma is cooking.

I have lots of friends at school that love my new gait walker. I can communicate on my Wego with my eyes. I also have so many people who love me and call me their "angel".

My grandma always says, "There will be a cure someday Gracie and I know I will hear your voice."

 February Featured Angel

Featured Angel: Mariano Jonell Rosa

My name is Mariano Jonell Rosa, named after the baseball pitching legend Mariano Rivera from the New York Yankees or you can just call me “Nano”.

At just 2 weeks old I had contracted a viral infection. At 2 months, I was hospitalized for “seizure like” activities and pneumonia. My seizure activity was actually silent aspiration. That was when I got a little tube that went through my nose to my belly so it could feed me or give me my medicine. Later in January 2015, I went for another visit to the hospital for bronchiolitis, acid reflux, fevers and aspiration. A few months later that is when I got my “G Button” and fundoplication. The surgery was scary for my parents but I overcame such a strong adversity. I’m a born fighter.

At all my hospital visits I had to take so many tests, mommy and daddy wanted to find out why I wasn’t reaching my milestones or why I was always getting sick. That is when the nice genetic doctor told my parents I had a genetic disease called “X-linked intellectual disability type 13 associated with a mutation of the MECP2 gene”. Mommy calls it “MECP2 Variant”, for short. It is like what my Rett Sisters have but I’m a boy. It means it can be a scarier and more complicated.

I am a mix of Puerto Rican, Chamorro, Filipino and Irish, but everyone knows I am a Texan because I was born in Fort Sam Houston, Texas. Maybe that is why I am so tough. Its in my blood. I show my parents and the world everyday that I love my life. I fight everyday for it. I have many cousins that I love to hang out with when I visit family. I love to roll all the time, watch cartoons, listen to music (especially KSBJ when I get to ride in the truck to visit my friends at the clinic). I take many trips with mommy or daddy to the clinics, that way the doctors can learn more about me and maybe one day help another kid just like me.

I have many good days, especially the day’s daddy gives me a little chocolate ice cream while mommy isn’t looking (Shh... don’t tell her). I have a huge reason for living and it’s not just for my family. I think it is because God sent me here to share with everyone how each life is precious and most especially for one-day to help find a cure for my brothers and sisters that fight the same battle. My Name is Mariano Jonell Rosa and I approved of this message. #MarianoJonell #cureMECP2 #cureRett

 Featured Angel January

Featured Angel: Katelynn Stephenson

Katelynn was born on April 20, 2004. She was the most precious baby girl I had ever seen. She was such a happy and good baby. She hit all her milestones on time. She walked, had a ten word vocabulary, fed herself, and played with her toys. Then at 18 months it all changed and stopped, except she still walked. I decided to have her evaluated and took her to her first neurology appointment. At 2 years old, Katelynn was diagnosed with Rett syndrome.

Katelynn was and still is a happy little girl. She loves to watch movies, have books read to her, paint, go swimming, and play with her younger sister. Katelynn loves to go walk around outside in the yard. She is like any 11 year old girl. She loves to have her toenails painted and to go shopping for new clothes. She has her own way of letting you know if she wants something or not with her eyes. Katelynn is in sixth grade. She really enjoys school. She also communicates by switched. We are hoping to be getting the Tobii communication device soon. She has already tried it with her speech therapist to see how she would do. Katelynn did awesome with it.

Katelynn had spinal fusion surgery in June 2015. I always knew Katelynn was a very strong girl, despite all she goes through. But when she had to go through that. She really showed me how strong she is and that she has a lot of fight in her. She is doing great and still walking really good. Katelynn has been and still is an inspiration to everyone. She has taught me to enjoy the small things in life. And to be strong no matter what life throws at you. I am proud to be Katelynn's Mom!!

 

 Featured Angel November

Featured Angel: Isis Isabella

Isis Isabella was born on spiritual day of November 11, 2009. She was born with thick black hair that had just a hint of red in it. I've never known a baby to smile right away until she was brought into this world. Isis filled the room with love within a matter of minutes, I knew at that moment she was going to change the world some how some way. I always thought I knew what true love was but not until November 11th at 11:58 pm did I fully understand the meaning of love.

Isis met all her milestones up until the age of 2 when she hit her regression stage. She spoke 20 words and her favorite thing to ask was "What's that?". After her 2nd birthday she stopped learning to speak new words and slowly stopped saying the words she had once said. It took many, many doctors visits and months to get her misdiagnosis of Autism in March of 2013, which gave us a little bit of idea on what was going on but not the full picture. We finally pushed for genetics testing and on July 3, 2013 we received the heart breaking news of her actual diagnosis of Rett syndrome.

Isis has never let Rett syndrome get in the way despite all that it has taken from her. She lives for excitement. Riding horses and quads, swimming till her fingers prune up and always laughing at anyone's joke. She has never given up, even though she is in therapy 35 hours a week, she always strives for greatness.

Spongebob has her heart, so yes she does yell at me when I limit her show time. Isis is just like any other 5 year old little girl. She just has a unique way to express her wants and needs, that happens to be her communication device called Tobii. Isis has come so far in the past few years and I'm so very proud to be called her mom.

 

Emberly

Featured Angel: Emberly Reese

Hi! My name is Emberly Reese. I am 2 1/2 years old and was diagnosed shortly after I turned two. I am not letting Rett stand in the way of my having fun! I love to go swimming and swing at the park. I enjoy driving around in my jeep with my crazy 5 yr old sister Adelyn. She makes me laugh so much! Adelyn reads me stories and gives me lots of tickles.

My mom and dad are trying to figure out how to communicate with me and use picture cards that I can chose from. They really know I like to watch Doc Mcstuffins! I am learning to potty train and I think it's a hoot. I go to preschool and play with my friends and I am learning my alphabet! I cannot talk or use my hands much to play. I can self feed and LOVE to eat! I am working on standing independently and have taken four independent steps! This is big for me since I never learned to walk before. I am getting a walker and a Tobii soon and I can't wait to start walking and "talking"! Everyone is super supportive and they love every day when I give kisses and smiles!

 

Shona

Featured Angel: Shona Parker

Shona was diagnosed at approximately 2 years of age after failing to reach milestones and having very poor immunity.  She had a small head and low weight was doing poorly. Shona always had a lot of digestive problems, severe colic and constipation. Shona never walked or crawled and had difficulty sitting.  She did a lot of hand mouthing and was always in so much pain.

Nowadays she is on a soft moist diet, gluten and dairy free which helps; she still cannot manage oral fluids. Last year Shona had a gastrostomy tube inserted and that has been the best thing for her. She can now take all her medicines, fluids and liquid diet if unable to eat orally. Shona also has epilepsy and dystonia; she takes seizure medicine and rescue medicines if needed.

Despite everything she has a happy life. She loves her animals; she has two dogs, Wally and Gus.  She also has a cat named Fifi. In addition, she has lots of rabbits and her mum works as a groomer in the stables so Shona is often down in the yard! Her big love in life is watching 'Barney’ and she has lots of DVDs.  She has been to America to see him!

Shona enjoys her swing; she loves going out in the wind and rain and she enjoys holidays on remote Scottish islands. Shona is just like any average child of her age; she likes dressing up as a princess, watching ‘Frozen' and playing with her dolls . She loves to watch her cousins.  She has a quick sense of humour. She loves music, painting, birthdays and fun. Shona attends a 'special needs' school in Glasgow called 'Isobel Mair' which she enjoys.  Shona uses eye gaze equipment to communicate.

 

 Lyla Hall

Featured Angel: Lyla Hall

Lyla was diagnosed with Rett syndrome in February of 2015. It was discovered at around 3.5 years old. She has had her struggles getting to, and continuing after her diagnosis, but for little Lyla, those struggles have given her, and everyone around her, strength. Even without words she conveys so much emotion with her eyes and her facial expressions. When you see her smile it makes all the late nights, long car rides, screaming fits and stressful days worth it. She has always kept her smile coming back to shine through and brighten up all the cloudy days. Sometimes she can almost make you forget those cloudy days were ever there.

Now that she'll be turning four soon she loves to be called a “big girl”. Compliments, food, hugs and kisses from her family are just some of what make her the happiest. She loves music and when people sing to her. She loves certain books and is picky with what she likes to have read to her. Cookie Monster, Bubble Guppies and Blues Clues are some of her favorite things as well. Lyla may not be able to stand on her own for long, walk or talk, but her strength stands strong. Her loved ones walk for her; her voice speaks volumes looking in her eyes. Lyla continues to be an incredible inspiration and in such a little amount of time, has come very far.

 

 Featured Angel June

Featured Angel: Tessa DeAngelis

Tessa was born on September 1, 2011, the day after her big sister Stella’s 3rd birthday.  She was a calm, alert, happy and beautiful baby.  She ate well, smiled, laughed, cooed, rolled over, sat up, clapped and babbled at relatively age appropriate times during the first nine months of her life.  She had a little trouble gaining weight, which was resolved by starting infant cereal a little early.  Looking back, that may have been our first clue.

By her first birthday, Tessa was “butt scooting” around the house and feeding herself with a raking grasp.  She did not have a pincer grasp, was not pointing, waving, or crawling traditionally.  A nagging feeling set in.  A week after her first birthday, she began four point crawling, and from 12-15 months her gross motor skills increased rapidly.  She perfected crawling, began climbing anywhere and everywhere, pulled to stand, cruised furniture and used walking toys.

By 18 months, she was a pro at all she’d learned and even added a real word to her “mama”, “dada”, “baba” babbles – “baby”.  She said it quite appropriately and we were thrilled.  She was able to take out her binky on command, turn a light switch on or off, and copied many things her sister did. But, since she still wasn’t walking, we engaged Early Intervention.  That nagging feeling was still there.  They were stumped and her services were minimal.

Not happy with no progress after two months, we saw our first neurologist when she was 20 months old and we suspected something was very wrong by then.  The light had seemed to go out from behind her beautiful blue eyes.  Surprisingly to us, her neurologist did not suspect autism.  So a battery of blood, urine, and preliminary genetic tests were performed, only to find no answers.  Then, seemingly overnight, at 22 months, Tessa began to wring her hands constantly.  It became harder and harder for her to turn the pages of books, one of her favorite things to do.  It became harder for her to feed herself.  It became harder for her to climb up the stairs.  It became harder for her to use her arms to pull to stand.

The week before her 2nd birthday we had a follow up visit with her neurologist.  He immediately suspected Rett syndrome.  We could not believe it.  By then the wringing was more intense and her one word had disappeared.  As much as we did not want to believe, the diagnosis fit.  Amazingly, we had a childhood friend with an older daughter with Rett.  We contacted her for support and made an appointment at the Boston Children’s Hospital Rett clinic.  A few weeks later it was confirmed.  MECP2 mutation R255X – Rett syndrome.

In the year and a half since then, much has changed.  The light is back in Tessa’s beautiful blue eyes.  She is happy and engaged, luckily with minimal health issues.  She attends public preschool full day in the substantially separate classroom and receives all of her services there.  We do hippotherapy and aquatherapy each once a week.  We are lucky enough to have received our own Tobii eye gaze device for Tessa at the beginning of the year and we are really starting to see her personality shine through.  Though she does not speak with her voice, its clear she has much to say!

She is not walking, but is quite mobile.  She “walks” on her knees (and is very fast!).  She can stand for short periods of time on her own and much longer while supported.  She has a gait trainer at school and loves participating in gym class.  She has worked very hard for the few independent steps she has ever taken and we are so proud of what a fighter she is.  Tessa loves music, especially Taylor Swift.  She loves being read to by her sister, going to the grocery store, the iPad, Princess Sofia, Curious George, and eating just about anything.  We are fortunate to have more good days than bad, and have learned so much from Tessa these past 3.5 years.

 

 Featured Angel May

Featured Angel: Vella Bahl

Isavella (Vella) Veronique is a beautiful, ray of sunshine who lights up everyone and everything in her path. Her love, laughter, smiles and unbridled joy pierces through all symptoms of the disease that may have left her with physical obstacles in life, but has not been able to affect her beautiful, triumphant spirit.

Vella is an angel amongst angels. Thirteen years ago, she came into our life and has been our inspiration every day. She is our inspiration to be a better person, stronger person, more loving person, kinder and gentler. Her inability to speak does not limit her ability to communicate her heart.

Isavella has changed the lives of everyone she encounters. She has been described by others as beauty realized. Her stepdad, Marcel, calls her "his princess".

She is the older sister to another Rett angel, Analeesa Sophia. 

She thinks of her sister as her baby and loves and dotes on her. Giving her kisses and hugs freely.

Vella loves many things. She loves interacting with her friends, creating sentences at school, watching the wind in the trees, playing with her puppy, giggling with her stepdad, walking outside on a sunny day, going to her grandpa and grandmas on a holiday, cuddling up with her sister, listening to music, watching movies with her family, story time, getting dressed up for school and dancing with her mommy.

Featured Angel April

Featured Angel: Allie Coffman

Hi! I’m Allie! I’m 12 years old and live outside Bucyrus, Ohio with my mom, dad, and big sister Jenna.  We are a busy family and I have lots of “loves” in my life.  I love hanging out with Jenna and watching her volleyball and softball games. I’ve played Miracle League softball myself for the last six years and love it, too!  I can finally keep my eyes open when the pitch comes in.  Jenna is my “buddy” on the team and helps me hit the ball and run from base to base!  Other things I love are horseback riding therapy and “swimming” in our hot tub!  Mom says it’s good for me…I just love floating around!

I have two dogs and three cats who love me just as much as I love them!  They sit down beside me and let me pull their ears all I want.  We take lots of family vacations. Every summer we go to the beach and I love playing in the sand and letting the water rush up on me!  We also go to Canada and dad takes us out on the boat.  The faster the better!

I love music, riding rides, swinging, and watching Strawberry Shortcake!  One of the most exciting things I do every year is raise money for Rett syndrome research.  Our family and church has organized “Allie’s Rett Walk and 5K” for the past six years and so far we have raised over $30,000 for Rett syndrome research! My friends from school come and run and I get pushed the whole race.  I haven’t won yet, but I sure enjoy the ride!

My story is a little different from most girls with Rett syndrome, though.  I never had any “normal development” at all.  I spent the first eight months of my life at Columbus Children’s Hospital battling another disorder which ironically gets better as time goes on.  What luck! By the time my parents realized something else might be wrong, I was almost four years old.

Even though I’ve never spoken a word, been able to run, jump, or use my hands, I know I have a special purpose in my life. My grandparents, aunts, uncles, and cousins all love and support me!  My smile can bring tears of joy to your eyes and I have my own special ways of getting my message across to others.  I want people to know that I love my life, even with it’s limitations, and can’t wait for a cure so that I can tell you about all the other things that I love!

Featured Angel: Ava Carol Guy

The diagnosis…
Ava is our four and a half year old daughter.  Ava was about nine months old when we noticed something different about our angel (Rett was kicking in).  The first thing we noticed was that Ava had lost all her verbal communication; she had already been saying about five or so words clearly.  The second thing that prompted me to head to our G.P was when she I realized she had lost skills. Ava was no longer able to clap or wave.  As an early childhood teacher I knew regression was a red flag!  We then as a family were given the diagnosis that she had some form of genetic abnormality due to several deformities picked up by our paediatrician.  They prepared us with the fact that we may never find out which one of the thousands of genetic problems this might be. I was not prepared to live our life without knowing so I began to research via the internet, this led me to Angelman’s, Fragile X, etc. and eventually to Rett syndrome.  As soon as I found it I knew that I had found my answer.  From this stage things moved very quickly for us. Ava was tested and it was positive.

The aftermath…
We decided as a family that we would try and make life as normal as possible for our angel.  By this time I had since given birth to Ava’s younger sibling Nikita (who does not have Rett), she is exactly 13 months younger than her sister.  Ava also has an older sister that my husband has from a previous relationship: Phoenix, who is now 15.  Phoenix lives in Australia but we fly her over every school holiday.  Ava has a very close relationship with her sisters; she is also very close to her nana (my mother, Maria) and loves spending lots of quality time with her nana.  Her nana has now become her respite carer;  they have a truly amazing bond.  Ava is also extremely close with her aunties and cousins, not to mention all the teachers and children at our Early Childhood centre that we all attend.  In fact Ava loves people and they all love her.  She manages to touch all the people she meets with her infectious smile and courageous attitude.  Ava loves to laugh and her giggle can melt any heart in the room.  When Ava is happy and excited she loves to squeal and blow mouth raspberries.  Her favourite things are her toys that talk; she is so clever at being able to manipulate them to talk and communicate with her. 

Even though Ava can no longer speak, she is a very effective communicator.  She uses her eyes to point to things and she will always let you know when she is not happy.  One thing that Ava really doesn’t like is lateness!  She loves routine such as food times and sleep times, and if these times are thrown out of whack she will not hesitate to show her annoyance at this.   Sometimes once she is upset she can be very hard to calm back down, but these episodes are very far and few between as we know what our angel likes and we love to hear that giggle and squeal of delight from her.  Ava has a pet dog named Blue that she absolutely loves; and she is always captivated and entranced by bubbles and fireworks. As I mentioned earlier, her absolute favourite thing is food and eating. Her favourite food is macaroni and cheese.  If she could, she would eat this every night!  Lastly Ava loves the car; she is such an awesome traveller and loves coming away on holiday with us as a family. She is such an amazing person and we are such a lucky family to have her in our lives, everything that she has gone through continues to teach us as a family the kind of people we want to be as she is truly inspirational, and this is what makes my girl truly special!

Featured Angel: Yara Rain Elion

Hey everyone, my name is Yara Rain Elion. I am about as sweet and cute as you get. I have the most contagious smile and laugh, and I love to give kisses and make jokes. I was a healthy happy baby, who cried little and seemed to be a teacher of patience from birth. Family and friends called me their “Buddha Baby”, as I seemed mindful beyond my years and acceptant of all energies around me. It became obvious to my parents that something was amiss, when I failed to crawl or walk. Other developmental milestones were on target, and I was speaking and linking words together. I spoke of friends and family, and of my love for eggs, bananas, cookies, balls, music, jumping, and games.

During the process of my parents pursuing developmental, neurological, and genetic testing, I lessened my speech to the point of near absence. My hands began to engage in rhythmic motions, which interfered with my physical and fine motor gains. To the surprise of my family, friends, and specialists, genetic results confirmed a diagnosis of Rett syndrome at 18 months, and within the next two months increased symptoms presented. Regression set in and hand function was more intensely compromised.   I lost my ability to pinch and point, and my hands came together at midline preventing me from efficient hand use and body navigation. My processing speed slowed, and it became crippling to actualize my minds intent. I know what I want to do, but I just can’t control my hands, general body, and voice most of the time to get things done.  Sometimes I can’t look at people timely enough to respond with social appropriateness; however, trust me I want to and I do understand you.

I continued to smile, love, and be loved. My big sister, Zaya, still makes me laugh, and I have a love for people, music, and learning.  My dad works hard to support our family, and gives me great hugs and kisses. He is one of the most creative, fun, and funniest people I know. I spend majority of my time with my mom, who I communicate with regularly, and who is my greatest advocate and friend. I spend many hours participating in therapies with an amazing team of individuals. I have speech therapy with Kari, who is always the light in my day. She knows how to draw me out and gets my soul. I have physical therapy with Angie, who believes in me, respects me, and encourages me to grow. I trust her to manipulate my body, and she often makes me smile. I have occupational therapy and hypotherapy with Chris, who helps me explore and celebrates my successes. I have Kathleen, my developmental guru, come to my home where she helps me spread my wings and shine, with all her awareness of subtleties and all her support for my family and best interest. I have Debbie and Sherry in my life, with their most amazing generosity and love, giving of their time to know and teach me. I have my grandmother, who is the light of my day, always confident I am smart and mindful, and who has a beautiful and creative voice. I have amazing friends, family, babysitters, and teachers who play music for me, and help meet my needs and make me smile. I Just began preschool this year, and have the most loving and helpful teacher and aid, and the kids in my class are like bright lights, which warm my soul.

I so appreciate all the love and assistance given to me, and I vicariously experience the world through all of you who dance, sing, teach, and guide me through nature and the magic around me. I wish I could walk, run, jump, reach, talk, manipulate, play more freely; however, I am truly an angel warmed by the sun and guided by the stars. I have much to teach you all…my eyes and disposition open doors to all who love me.

 

 

Featured Angel: Hannah Carlson

Hi! My name is Hanna. I am 9 years old and I have Rett syndrome. My family tells everyone that I am a sweetie who enjoys life. If you are ever feeling sad or irritated, tired or stressed, all you need to do is spend a few minutes with me and your outlook and day will be greatly improved! I love going to hippotherapy (horseback riding), going for bike rides, watching videos, listening to music (K-LOVE, Nora Jones, Mama Mia, bluegrass, and many more), and roller coasters.

My sister Caleigh (5 years old) is my best friend She makes me laugh and looks after me. The other day Caleigh was on her way to gym with her kindergarten class, when I was leaving the gym at that time and a teacher overheard Caleigh say "My sister Hannah is SO AWESOME!"

 

 

 

Featured Angel: Liliana "Lily" Salerno O'Mahoney

Hi, my name is Liliana but I go by ‘Lily’.  I just turned 3 years old on February 8th.  Both my mommy and daddy tell me all that time that I’m the sweetest, smartest, prettiest, hardest working, bravest and most amazing little girl that they know.  I think it’s because I give them tons of hugs and kisses and smiles.

I’ve been getting almost 30 hours a week of therapy, through Early Intervention, for over a year which has helped me in so many ways.  Lucky for the therapists that I’m motivated by berries and music (my two favorite things in the whole world, second to my parents and third to my therapists and nanny).  My boyfriend Johane (ok, really he’s my physical therapist) gets me moving up and down stairs to keep my body strong.  I give him plenty of cuddles and kisses along the way.  Lynda, my occupational therapist, comes over almost every day and we do so many things like crawl through tunnels, pick up heavy objects and jump on the trampoline (though I’m still working on my jumping skills).  She plays lots of great music for me!  Sam and Maureen are the therapists who spend the most amount of time with me during the week.  And I just love them both so much.  It’s not just because they give me plenty of berries, videos and hugs.  They are so dedicated to helping me develop and grow.  And they keep introducing me to new things all the time, even if I don’t like these new things initially.  Desiree, my best friend and nanny, always makes sure that I have yummy food, good music and a clean diaper. 

My mommy, daddy and I have been on quite the journey with my health.  I keep them both very busy! I was diagnosed at 18 months with autism/pdd-nos and global delays.  A few months ago, through a prolonged EEG, we found out that I had ESES, which is a precursor to epilepsy.  As we were trying out medication (which has made me groggy and grumpy) to stop the ESES, the genetics results came in with a Rett diagnosis.

This was just two weeks ago.  So all of this is really new to me and my parents.  But we have so much love and  support – from my grandparents, aunts, uncles, cousins, friends and now this new community of friends through IRSF – that I know I will live a happy, full, purposeful and beautiful life.   As long as there are lots of berries.  And good music.

 

Featured Angel: Ella Barton

Hi! My name is Ella. I am a very happy seven year old girl who loves to be included in what my friends and family are doing. My older brother Luke adores me and we like to go fishing together. I make friends easily and have made close friends with other nonverbal children. I may not be able to speak or sign anymore but I communicate well with those who know me.

My family really appreciates the hard work and dedication of the Rett Racer runners and everyone who is working to help find treatments and a cure for Rett syndrome. The research indicates that a cure is very possible and we can only pray that through continued fundraising and research that a cure is not far away! My angel friends and I are often not able to speak for ourselves so we need YOU to do it for us.

 

Featured Angel: Francesca Scarano

Hi! My name is Francesca Scarano. I am the apple of my dad's eye; he works endlessly to make sure I have everything I need.  I have a brother, Domenico, who is 16 years old; Domenico is my favorite, when I am scared or in pain I always look for him to comfort me.  I also have the special privilege of living with my Grandmother, who has dedicated every free minute she has to help my family with me.  My family thinks I am quite a character, despite this horrible diagnosis, they see how I have managed to allow my wonderful personality to shine through.

My mom is always telling me what a jokester I am; I love to laugh and love to use my EccoEyegaze to talk. I have even managed to use it to tell my teachers they are mean, and to tell the nurses to go home when I have had enough, and also to tease my brother.  My brother loves to lift weights so I decided to help out him when his girlfriend was over and when he walked into the room, I said “Hi, Domenico, you look Jacked!” Needless to say my whole family was laughing so hard.  I managed to melt my Zia;s heart on her birthday when I used her Ecco to tell her Happy Birthday.

The hardest part, which my family tries to forget, is all the bad that goes along with Rett syndrome; the pain, watching me suffer and not being able to do anything to change it. The pain of my family members trying to cope and wonder why is heart breaking.  Each and every day I wake up with a smile and have shown my family the strength to move forward until the cure comes.  My family of course remembers their little girl, who used to yell Daddy Daddy, and how I got into so much trouble opening the oven door, bending down to pick up a ball and playing with it.  My family has also watched by my bedside as I have gotten closer to God and fought my way back to them not once but many times.  My family believes I have a purpose, I teach them everyday how to be thankful for what the little things in life are.

This summer has been one of many new events, we went to our first movie at the Cinema with friends; my friend fed me popcorn the whole movie! When she didn’t, I made sure to stare her down until she gave me more. I got my first pair of boots to wear at school, and a great dress to wear with them.  I no longer wanted a life jacket, I wanted to only swim with floaties on my arms.  I went on a cruise and did fabulous.  My family is so proud of me for finishing second grade and testing proficient and advanced with my peers. My family and I will continue to fight and raise awareness and funds until each and every Rett syndrome girl is cured.

Please watch for me on the Rett syndrome trucks from Road Scholar as I raise awareness across the country one mile at a time.
Thank you for taking the time to read my story!

 

Featured Angel: Leah Layton

Hi! My name is Leah Layton. I was born Feburary 22, 2007 in Palo Alto, California. My first year was a dream. I ate and slept so well and learned to do lots of things on my own, including saying lots of words, phrases, and animal sounds. I fed myself and loved to read books. It took me a little longer to crawl, cruise and walk, but by 26 months I was running. Around the same time I started walking, my mom and dad noticed a few words disappearing. I was enrolled in an Early Start program and Teacher Jan suggested I get tested for Rett syndrome. So I did, and our lives were never the same.

Over the next few months, Rett syndrome took my words and hand use, but it didn’t take my spirit. Mom says my smiles and giggles can still melt anyone and dad says my bright blue eyes twinkle on the darkest of days.
When I was first diagnosed, we were lucky enough to live close to Katie’s Clinic in Oakland, CA where we received fantastic care and met some wonderful people. When I was four, dad decided to go back to school to get his MBA, so we moved across the country (I was in the car for SIX days!) to New Hampshire where he attends the Tuck School of Business at Dartmouth College. On our way, we were able to meet even more wonderful Rett families. Next month, dad is going to graduate, so we are moving again. This time, we’re just going halfway across the country where we’ll settle in the Midwest (Quad Cities, IA/IL) and look forward to meeting even more friends!!

Last May, my little sister, Kate, was born. She used to be kind of boring and just cried a lot, but she is getting to be more fun every day. And she gives me the best kisses.

I love spaghetti and swimming, my baby sister and sunshine, playing in the snow and swinging. Kung Fu Panda is probably the best movie ever made and, with my long blonde hair, I look a lot like Rapunzel. I love Taylor Swift and have been a big fan of hers since I was two. We have dance parties daily at our house so I have some pretty sweet moves. I still love to read and some current favorites are The Magic Treehouse Series, books about horses, and fairy tales.

I’m currently in Kindergarten where I am mainstreamed with a one-on-one aide to help me through my day and keep me safe. I love to learn and be with all my friends. I work so hard at school that sometimes I’m asleep when my mom comes to get me off the bus. I have physical, occupational and speech therapy at school and I get to ride horses once a week too!! I used to have seizures, but haven’t had any since January! And that’s a good thing because they made me really tired. For the past few months, I have been trying out some eye gaze computers too – that’s a lot of fun. 

My mom and dad recently ran in the Boston Marathon on Team Rett Fundracers. They didn’t get to cross the finish line (where I was waiting with my little sister and my grandparents!), but they did reach their goal of raising more than $10,000 for Rett syndrome research and they said that makes the whole experience worth it. My mom’s friend Amy also ran the New York City Marathon last fall on my behalf and raised more than $1,000 for the IRSF!
My mom came up with the logo for the 2013 Family Education and Awareness Conference in Midway, Utah. Mom and dad both grew up in Utah, so they were excited to share their childhood home with our Rett family! Mom said “This is the Place for Hope” was a perfect logo for the IRSF conference because the people who settled Utah had hope that together, they could build a better life and future for themselves in Utah and she has hope that together, we can all build a better life and future for everyone with Rett syndrome! Our friend Laura Clarke Hawkins painted a really pretty picture of Midway with some Sego Lilies (the Utah state flower) for the conference. Sego Lilies were a source of strength and sustenance for the settlers of Utah and mom says the IRSF and our Rett syndrome family are a source of strength and sustenance for everyone who is a part of it.

My mom and dad say they have learned lots of of patience, kindness, hard work, determination, laughter and love from me. Personally, I think they’re going to have to learn more patience from Kate. Sometimes my days are hard, but I choose to smile and laugh and know that I am blessed!

 

Featured Angel: Lucy Heroe Heimburger

Hi! My name is Lucy Heroe Heimburger. My parents had no idea how significant my names would be when I first joined the family. My dad says I was filled with light from day one (thus “Lucy”) but it wasn’t until I was finally diagnosed with Rett syndrome at 2½ that everyone realized just how much of a “hero” I’d need to be in my life.  I’ve tried to be a hero for my family for 5 years now—and they say I’m doing great!

Those who know Rett syndrome know parts of my story already: I cannot talk, so I try to make my wishes known through my hands and eyes.  And even though I can hold my body weight while sitting or standing, I struggle to take steps—even with lots of help.  I also struggle with intermittent pain, slow growth, and the effects of over-stimuli.  But that, of course, is the Rett syndrome, and Rett syndrome is only part of who I am.

I’m told that my smile instantly warms anyone who sees it.  My teachers and therapists tell me my laugh is infectious.  According to my dad, my blue eyes “see through pretence to find the essence of anyone she looks at”—but I don’t know what that means: I’m just happy to be here!  I look out at the world in constant amazement and always find someone or something wonderful to see.  I love music (especially by Elizabeth Mitchell!), and enjoy making music myself on our family piano or on my dad’s djembe drum.  In fact, I love using all of my senses: in addition to sight and sound, I love to smell Utah lilacs, to taste the fresh fruit smoothies that my mom makes for me, and to be held and loved by my two brothers, Fischer (16) and Mason (11).

I live in Midway, Utah—the site for this year’s IRSF Education & Awareness Conference.  Midway is a beautiful little village tucked up against the backside of the Wasatch Mountains.  Here I can breathe clean air, watches horses run year round, and sit out at night to watch the stars with my family.  I love nature and have hiked, climbed, and camped with my family on the top of Mount Timpanogos (the big mountain you’ll see when you come to Midway), and down in the bottom of the Grand Canyon at the waterfalls of Havasupai.  I cross-country ski, go on long runs, and bike all over Midway with my family.  I also ride horses every week at the National Ability Center in Park City—which makes me happy, proud, and strong!

I know that no one would choose Rett syndrome for their daughter (or son), and never a day goes by that my parents don’t wish they could take away some of my pain, wave a magic wand to make me walk, or protect me from the stares of those who don’t understand what’s happening to my body and mind.  BUT, according to my family, there is beauty and grace in the Rett experience.  My mom & dad put it this way: “Lucy is a constant source of joy in our home, and in our community.  She teaches us everyday about happiness, about gratitude, about love; she makes all of us better by not withholding these things from others.”  Thanks Mom & Dad!

Everyday my family tells me that I am “beautiful, happy, nice, smart, strong, and whole.”  I work hard because I want to be all of these things.  Though the day-to-day of Rett syndrome can be pretty overwhelming for me and my family, when we hold each other (and I give some of my patented “love pats”) we know that we’re blessed to be together, and that everything is going to be alright.

If it is at all possible for you to join us in Midway this year, please come and meet me, my brothers, and my parents (Matthew & Anna).  My older brother Fischer is even going to put on a Nature Walk and complementary Smoothie/Bagel Fest for all of the Rett girls & boys, and their caregivers, on Saturday, June 29th, for his Eagle Scout project!  He, and all of us Heimburgers, want you to feel welcome, loved, and full while you are here.  Since my diagnosis, we’ve traveled to Katie’s Clinic in Oakland and the Bluebird Center in Houston—and we’ve never met a Rett girl that we didn’t instantly love, a Rett family that we didn’t instantly bond with, or a Rett doctor/researcher/therapist that we weren’t instantly in awe of.  If you come to Midway, please seek us out.  And if you cannot make it to the conference this year, please know that you’ll always have friends in Utah. 

I’m smiling my “hello” and “welcome” to you right now!

 

Featured Angel: Maranda LeeAnn Ingram

Hi my name is Maranda LeeAnn Ingram. I was born December 16, 2010. I live in Quitman, Texas (East Texas) with my mom, dad and big brother. I was diagnosed with Rett syndrome when I was 18 months old. My parents had concerns around six months old when I did not show interest in transitioning or crawling. The Doctors said to wait and see for the next six months; she may just be slow or lazy. When I was 12 months old testing started and I began physical, occupational, developmental and speech therapy. In the meantime, I had a MRI, blood work, EEG, EKG, and even had to wear a helmet for 4 months; but everything came back normal. At 14 months old I was diagnosed as having a mild mental retardation; my parents knew this wasn’t the case because I was very smart. By 18 months, I was still unable to talk, transition, crawl, and pull to stand, or walk. I lost my ability to self-feed and most of my manipulations skills, and my hands were constantly in my mouth.  

On September 29, 2012 my mom and dad received a call from the geneticist who informed them they had to come to her office she needed to talk to them and she would not say why. The look on her face when we all three arrived at the doctor’s office told us she was not going to give us good news. The geneticist told my parents I had a thing called Rett syndrome and though she was not familiar with what it was, she understood that it was a life threatening disease that caused little girls to not be able to live a very fulfilling life. By this time both of my parents were crying and really did not listen to the rest. As we made the long drive home my parents cried and decided it was time to find someone who knew what they were talking about.And that was how I ended up at the Blue Bird Rett Clinic in Houston, Texas. After speaking to the wonderful Doctors at the Blue Bird Clinic my parents found hope; they made it their mission to spread awareness and make sure that other parents never felt the hopelessness that they felt. 

My mom and dad were both criminal investigators and they made the decison to sell everything they own so my mommy could be home with me every day. My daddy stepped down so he could work a regular shift and be home with me on nights and weekends. We now have such a normal happy life; I have some small issues but nothing my parents can’t handle. Each week I have physical therapy twice, occupational therapy twice, speech therapy twice, and developmental therapy once, in addition to various other appointments for my eyes, ears, nutrition, and my general health. I still get to do my favorite things such as go to church (where they never put me down) , swing, swim, and watch my favorite cartoon Daniel Tigers Neighborhood, God has blessed us in so many ways that only another Rett parent can truly understand.

 

Featured Angel: Acasha Christine Nicholas (AKA - KK)

Wow, Im a featured angel! Where do I start...

Hi! My name is Acasha Christine Nicholas but everyone calls me "KK!" I am 6 years old and was diagnosed with Rett syndrome at age 2. I live with my mommy Rashida in New York City! I don’t have siblings, so being an only child makes me extra special; I mean who doesn't love getting all the gifts on Christmas! I go to school and have lots of friends. I communicate by using my eye gaze and lots of open vowels. I received a certificate for being a good girl at the dentist and doing all my work in school, mommy says I'm a natural!  

My dad and his parents, grandma and grandpa, come visit me on the weekends! It's the best because I know I'll get whatever I want at the restaurant! I see my little cousins and Aunt on the weekends too! They are wild and funny; Aunty Safiya and Uncle Trevor always know how to make me laugh! My favorite foods are Mac & Cheese, Grapes and Curry Potatoes! But only Grandma and Grandpa on mommy's side knows how to make it, mommy only makes BBQ Chicken well. 

I like to do fun things like go in the backyard, swimming with my friends, yoga with mommy, being with Uncle Jabari, going to the park, petting dogs and sneaking McDonald's nuggets! I love Yo Gabba Gabba, Fresh Beat Band and Max and Ruby cartoons. They make me smile and laugh. My bedroom is decorated with all my drawings, Princess Tiana sheets and I have powder pink walls. I enjoy hugging, flicking my lip when no one is looking, cooking in the kitchen, reading my books and rolling up in my comforter when I'm sleepy from a long day.

Thank you for taking the time to get to know me. Please help us find a cure. Miracles do happen; My family and friends pray everyday for a miracle to happen for me and for all the girls with Rett syndrome.

 

Featured Angel: Ava DePerry

Hello to all!

My name is Ava DePerry. I am called "The –Earth’s –Angel." I am 5 years old and I was diagnosed with Rett syndrome at the age of two. I developed normally up until nine months old. At that time my parents noticed I wasn’t doing the things my big sister was doing when she was nine months old. My Parents were concerned and took action. I had seen so many doctors and they all gave a different diagnosis - none of them were correct.

I was hospitalized with pneumonia for two weeks in Duluth, MN. They recommended Doctor Kanoff; he is one of the best neurologists at the hospital. He tested me, and told my parents that he was determined to find a diagnosis. He found one and came back and told my parents that I had a rare genetic deformity called Rett syndrome and that it happens in 1-50,000 women. My parents were shocked and cried and took a while to take it all in. My parents were in denial for about a year, until we got more information. My parents watched some videos of other children with some of the same features as me and realized that Rett syndrome is what I have and there are others like me.

My parents didn’t care that I was different. They love me as much as they love my big sister and think I am amazing. I would describe myself as having a good sense of humor and am very intelligent. I am also very lovely. I am not able to do much on my own. I cannot walk, talk or sit-up with out support. I have a wheelchair and a stander to help me get around. I use the stander to help strengthen my core. I have a jeep stroller at home for now until my new and improved stroller arrives.

I do communicate using eye gaze or switches. The voice output system gives me an opportunity to communicate with others. I can’t use my hands, but I have my big sister, parents, grandparents, great grandparents, uncles, aunties and cousins who lend me their hands when needed. I also have a feeding tube because I have a hard time eating and drinking. I have seizures sometimes, but currently they are under control. I haven’t had one for a long time.

Some of the activities I like to do include laughing at my big sister and cousin when they are together. They are very goofy and funny. I love giving kisses to my baby brother, and I love going on walks with my family! I love the fresh air. My all-time favorite shows are Sponge Bob Square pants and Dora. When I am feeling sad my family always makes me laugh by making daffy duck sounds or crazy faces. That always makes me smile and laugh. I also just love to cuddle.

I go to school and get lots of help from many therapists. Speech/language, Physical and Occupational therapists work with me as well as many representatives and coordinators. They are all tremendous helpers. I always get tired out after a days work with all of them, and have to take a long nap when they leave. I have a teacher’s aide, Ms. Vicki. She is a big part of my life and is with me a lot. We have lots of fun together at school. Ms. Vicki likes to sing, dance and helps me learn and play. I love her.

Thank you for taking the time to get to know me. Miracles do happen and my family prays each day for a miracle to happen for me and for all the ladies out there with Rett syndrome. Please help us find a cure.

 

Featured Angel: Jenna Rose Mickelson

Hi world! My name is Jenna Rose Mickelson. I am the daughter of Tom and Lisa Mickelson. I am the middle child sandwiched between my two incredible sisters, Amanda and Hayley. Amanda is the best big sister a girl could ever have. She has always watched out for me. When I was little, Amanda would improvise playtime so I would be fully included. With her beautiful voice, she would sing her favorite little mermaid song to me "Part of your World." She did not know, but it was my favorite too! She really made me part of her world! My favorite little sister, Hayley, has been like a big sister too. When she was a baby she seemed younger, maybe even like a twin. Mom would lay us next to each other, and we would smile and look in each other’s eyes. But as Hayley grew, so did her heart. When I was little, Hayley would come in my big bed and play with me. We would have hat parties! Amanda would join us too! As I grew up, Hayley has always been a kindhearted sister to me. I love my sisters so much! I am so fortunate to have such a loving family.

I also have two dogs. One is my Golden Retriever, Buddy. Buddy likes to lick my arm and put his paws on my lap. If I have a seizure buddy comes running and stays with me until he knows I have help. Casper, our little dog, likes to swim with me. My favorite sport is swimming. Since I was a little girl, my daddy would take me swimming all summer long. I am a West coast Arizona girl! On March 31st I will be 21 years old. So that’s a lot of swimming. Just like a mermaid I could move around in water. Daddy and I always have had a special connection. I think it was because every time he walked through the door I lit up like the sun, and would say "Gaggy." I stole his heart...but I do share... Daddy's heart was always big enough for all his girls!

My mom and I have had hours and hours and hours together through joy and through sorrow. Mom loves to sing to me and sometimes I hum back. Mom whispers sweet things in my ear and gives me lots of hugs and kisses. Mom tells me how much everyone loves me; she tells me how much my Daddy, my sisters, my grandparents, my Aunts, my Uncles, my godparents, my cousins and all my special caregivers adore me. Wow there are a lot! Fortunately, mom was blessed with an abundance of energy to take care of me. She also talks a whole lot. Thankfully the extra words have been able to be a voice for ME (to speak, sing, be my advocate and say prayers) because I only have a few words.

I receive lots of friendship and love through my homebound school program, therapy, hospitals, Doctors, (My compassionate doctor... Dr. Ron Fischler has guided my care for 18 years) neighbors and friends.

I love taking walks and visiting with neighbors and working on my computer: creating art and playing the keyboard. I hear from mom that it is no secret that I have taught many people what unconditional love is all about. She sees and runs into people that have been in my circle, they sweetly speak of me. They go on saying...I am special; they speak boldly when they tell her that I have taught them so much about life.

Mom said not only have I taught people about life, but I also played a role in finding the Rett syndrome gene. I am grateful that I participated in a number of protocols. It was not easy, but it was worth it! Mom said that it gives hope for the future of babies that will be born with Rett syndrome, and possibly may even help some girls who live with it now. Mom told me that one day Rett syndrome will have a cure, but ALL who were affected by it...the babies, their families and all who cared about them, will all know that every single Rett Angel had a purpose on this earth. Mom beams when she says that these amazing girls have changed the world by being courageous, and continue to give hope for a bright future. I know Mom and dad love me just the way I am. I am a hero in their eyes. I am told that I radiate unconditional love. I am a Rett Angel.

Love, Jenna Rose xoxox

*Mom wrote a poem almost 7 years ago about me. I would like to share it with you.

For Sweet Jenna Rose Mickelson: Perfect Dancing angel: While she lays asleep on her feather pillow a perfect angel appears to be, not one flaw on this perfect angel who the lord sent to me,

Her jet black hair spun like silk, her ivory skin like porcelain. Her fine features that are just right, she lay there sleeping all through the night,

*Dreaming of dancing, dancing all night, waking up charmed with a smile insight. The dance was enchanting she danced all through the night

Her birth was a miraculous site, a baby born on Easter night, All ten fingers, all ten toes, a perfect baby, a button nose,

We did not know what lay ahead, our precious baby so pure and sweet began to bloom into our Rose,

One day our world began to crumble our sweet child began to change, one by one her skills diminished we were told to take her home and love her all you can, she will be passing soon,

We took her across the land, we would have taken her to the moon, to help our precious child, but answers were only gloom

Her daddy said "let me take her place lord, give this child life," But the lord had other plans in mind the purpose would soon be insight

Her second birthday came with a ring, a diagnosis on her birthday, bittersweet full of laughter, and tears for our child, She will live for now, we do not know how long , she will have special needs and it will seem so wrong

Society will see her shell, the one that cannot move very well, She will not talk, or run and play but her heart is full of love and will be expressed every day,

The lord’s plan is apparent full of mirth, she brings about unconditional love to this earth Through her eyes my child speaks to me, abundance in peace and happy as could be

*Dreaming of dancing, dancing all night, waking up charmed with a smile insight. The dance was enchanting she danced all through the night A perfect dancing angel, she’ll be dancing in her dreams.

written by Jenna's grateful mother, Lisa Mickelson August 2005

 

Featured Angel: Katie Nues

Hi, my name is Katherine Nues but everyone calls me Katie. I am 9 ½ years old! I live at home in California with my sisters Melissa (5), Abby (4), and mom and dad. I love being with them, reading stories, going places, swimming together, listening to my favorite songs. I especially love when my dad plays guitar just for me, and helps me pluck the strings. I am in the 4th grade this year and have a full-time helper and lots of friends, both in my Special Ed home room and my Regular Ed classes. Science is my favorite. I love seeing my friends every day. They have fun helping me get around school in my wheelchair because it has light-up sparkle wheels :o) I like my chair too because I couldn’t go anywhere without it. They also think my new computer is really cool, more about that in a minute…

I have some things on my wish list this year. Mom says shoot for the moon and maybe we’ll catch a star! My first wish would to be able to talk with my family and friends. I try to tell them what I mean with my eyes. Sometimes they get it, sometimes they don’t. But they always try, and so do I. Last year my wish for a computer, a Tobii CEye, that works by tracking my eyes came true and we’ve been working to program it and get it mounted just right on my wheelchair. I practiced all summer and just started bringing it to school. We’re working on conversations now, and I hope to move on to homework soon. Yes, really, I want to do homework! It’s good that this computer reads my eyes because most of my body, and especially my hands, don’t do what I want. They do their own thing….all the time…and people misunderstand me. One time, the teacher was going to put away my computer assuming I was too tired to do more, but I was able to find and say, "I need a break. I just want to stand a minute". She helped me do that, and then I worked on it again for another whole hour! People often underestimate me, but this year might just be the best year ever for me to show ‘em what I’ve got!

I wish my seizures would go away too. They make me awfully tired, and I have to miss school. They happen all the time no matter what I do, or my parents and doctors try, but they seem to come less often these days and I am grateful for that. I am also glad that my mom and dad work so hard with the International Rett Syndrome Foundation, and Katie’s Clinic (yep, I’m that Katie!) at Oakland Children’s Hospital, to make my wishes come true. They say if they can make my wishes come true, then the wishes will come true for thousands of kids just like me, and that would be just incredible. These are just some of my wishes. Too many? No? Oh good, well then I’ll add one more wish: that you have a wonderful holiday season and a happy new year, because you deserve to have fun too, just like me! Thank you for believing in me! ~ Katie Nues, CA

 

Featured Angel: Sejal Madeline Shah

Hi! My name is Sejal, and I am 5 years old. I was born in Williamsville, New York, and I was diagnosed with Rett syndrome when I was 2. I have been through some tough times, but now I'm doing great. I have learned to walk short distances, I am learning to communicate with my eyes, I am starting to learn my letters and numbers, and I am happy, giggly, and healthy almost all the time. And in the fall, I'm going to start Kindergarten -- I can't wait!

I live with my mom, dad, and my favorite person in the world: my 7-year-old sister, Simran. I love to go over to Simran and interrupt whatever she's trying to do -- hey, that's what little sisters are for! I also have fun with all of my grandparents, aunts, uncles, and cousins. I really love being around people. I love making mischief, and I always have a gleam in my eyes. ;)

My favorite activity is horseback riding. I have been riding since I was 3, and I am getting pretty good at it. I love being around horses and bouncing up and down. I also love music classes, dance classes, swimming, and just getting out in the world with my family and friends. I like watching Disney Channel with Simran and dancing to the radio in the car. I have a feeding tube that runs all night, so I don't eat all that much during the day, but I do love soy milk, cheese, and fruit.

I am really happy the way I am, but it would be great if I could do more things for myself. I hope we will find a cure or a treatment for Rett syndrome. I know it would mean a lot to me and everyone who loves me.

Love, Sejal Madeline Shah

 

Featured Angel: Jillian Endres

Hi! My name is Jillian Endres but almost everyone calls me Jilly. I am 8 ½ years old and I was diagnosed with Rett syndrome at 17 months. I attend an amazing school where I am integrated into regular classes such as gym, art, music and library—and this year I will be in second grade! My main classroom is a therapy-based classroom so even when I am doing something fun, my teachers and therapists turn it into some form of therapy. I feel very blessed to "have it all" at school and I know my parents feel this way too!

Speaking of my parents, they could not be any prouder of me. I live at home, on Cape Cod in Massachusetts, with them and my two little brothers. My brothers, Griffin and Colin, are 3 and almost 2 years old. They have brought so much joy to my life—and excitement and craziness and loudness…but I love it all. They treat me so nicely by being gentle, caring and loving. They also bring me toys and books all the time. They help me move my hands to activate the toys or turn the pages of the book. They are always thinking about me and always want me to be involved in what they are doing.

One of my all-time favorite things is to listen to music. I love Raffi as well as all Jack Johnson. If I am feeling a bit sad, the magic trick is always my iPod! I also love the Wiggles, Barney and anything on the Disney Channel. When it is not too hot outside I love to go on my swing. I love the wind and even the rain! In fact, I have been referred to as "the element girl" in the past because I smile and giggle when I get to be outside on a windy, rainy or snowy day! I help my family and friends appreciate the little things in life!

Some not-so-fun things come along with Rett syndrome but I am such a strong person that I deal with these things most often with a good attitude and I never give up. I cannot walk, but I am wheeled around in a very sleek (and pink!) wheelchair. I cannot talk but I have several switches that I use every single day at home and at school—these voice output systems give me chance to communicate with others. I cannot use my hands but as I said, my brothers help me as well as all my family, friends and teachers. I have seizures but they are very under control and I have not had one since February! I cannot eat by mouth but I am ok with that because I am much happier and healthier now that I have my feeding tube. My whole family was really scared of it when I got it, but it has been the best thing that has ever happened to me.

I am so thankful for all that IRSF does for the families and all of the promising research they are funding. I know there are exciting times ahead for all of us who are affected by Rett syndrome. We just have to keep working hard and plugging away!

 

Featured Angel: Ashley Fry

Hello. My Name is Ashley Fry. I am 31 years old and have Rett syndrome. My family thinks I am here to teach a different kind of love. To me, it’s just love. After developing normally until 18 months, I started regressing. None of the doctors in Houston knew what was wrong with me. So, Mom and Dad took me to see Susie and Bears Kaufman at The Option Institute and integrated a program at home of one-on-one positive play which encouraged me, made me feel good about myself, and gave me lots of attention.

In November, 1983 my pediatrician, Dr. Merlene McAlevy saw a new article about Rett syndrome, and she and Mom diagnosed me. Dr. Alan Percy heard that my Mom and Dad thought I had Rett syndrome, and he had just returned from a conference on Rett syndrome and wanted to see me. He came to our home and diagnosed me with Rett. Everyone seemed very excited. We soon went to see Dr. Vincent Riccardi, our geneticist, where we met Dr. Huda Zoghbi, a young resident, who attended our visit. I think she fell in love with me that day, as she and Dr. Percy began researching Rett syndrome. The "Rett World" would not be what it is today without these Super Heroes. So, I am very proud that I was their first Rett patient.

I had breathing difficulties when I was younger, scoliosis surgery when I was 11, heel cord serial casting too many times to count, and have seizures, though they have now decreased in duration and intensity and last only 10-20 seconds long. I hate seizures. Walking is a part of my daily program, though everyone holds my hand as my balance is not great and no one wants me to fall.

I live in College Station, Texas with my Mom and Dad, Clifford and Judy Fry. My sister, Kristin, and her family live right behind our house. My nieces and nephews make me laugh a lot! My Granny, who is 97 years old, lives on our property in her own apartment. Every night I walk to her house and watch TV with her after dinner. That is our time alone. I also have two wonderful caretakers who help me. They are now part of our family. My favorite activities are going to the movies and restaurants and attending music day at my Dad’s music gatherings, going to Jazz clubs or any other kind of music festival, and hanging out with my sister, Kristin, who tells me all of her secrets. I am involved in Project Sunshine, which is made up of Texas A&M University students. They have lots of parties for special needs kids and adults. I also have a college buddy who comes to my home every week, and we hang out and visit.

Having Rett syndrome has been difficult, but overall I have adjusted very well. Mom and Dad feel that we always have to make the best of everything, so that is what I have tried to do. I am happy most of the time, and everyone tells me that my smile is magic. At night my Dad tells me the Lord’s Prayer. He tells everyone that the very first time he told me The Lord’s Prayer I looked at him as if I already recognized that prayer.

I have heard there is the prospect of a cure for Rett syndrome because with replacement of the MECP2 protein the brain will work correctly. When I get my words back, after I have thanked everyone who has ever helped me, I will immediately ask for a Coke and tell everyone to never ever give me vegetable soup again! If you would like to help me be cured of Rett syndrome go to www.firstgiving.com/process/teamarea and join Ashley’s Posse for 2011. Thank you, and blessings to all.

 

Featured Angel: Cameron Babiarz

Hi, my name is Cameron, and I was born on March 10, 2009. My parents had concerns when I was six months old and did not show interest in transitioning or crawling. Doctors said "wait and see" for the next six month. When I was 12 months old, testing continued, and I began physical, occupational, developmental, and speech therapy. In the meanwhile, my MRI and blood work all came back normal. By 18 months, I was still unable to sit, transition, crawl, pull to stand, or walk. I lost my verbal communication and self-feeding and manipulations skills, and my left hand was constantly in my mouth. At 20 months, we visited a physiatrist who made a clinical diagnosis of Rett syndrome. On January 7, 2011 at 2:45 pm, my mommy, who was 35 weeks pregnant, received a call confirming that I had Rett.

My parents allowed themselves one night to mourn. They woke up the next day and took action because our family is filled with fighters! The first thing we decided upon was my nickname Cammy Can. Then, within the next three months, my family and friends helped me raised over $30,000. My mommy tells people all the time that I’m the hardest working two-year-old in town!

Each week I have physical therapy twice, occupational therapy twice, speech therapy twice, and developmental therapy once, in addition to various other appointments for my eyes, nutrition, and general health. I just starting spending time with a very cool lady named Susan Norwell who facilitates communication between silent angels like me and other people. She helps Rett families show the world what we already know—that girls with Rett are really smart!

My little sister, Ryan, is four months old and makes me laugh all of the time. Some of my favorite moments are spent playing with her. I shower her with kisses to let her know that her big sister loves her very much. I think it is funny to watch my parents interact with Ryan. Since living with Rett has always been a normal way of life in our house, they look at Ryan like she’s an alien when she does things typical kids do!

I love being around people, especially my 19 cousins. And, I am so lucky that I get to see all four of my grandparents on a weekly basis. When I am not working hard in therapies, I love reading, swimming, listening to music, and swinging. My favorite time of day is family reading time with my mommy, daddy, and Ryan right before bed. I also love watching Sesame Street, especially the episode with Ryan Reynolds in The A Team. I wonder if he’ll consider working with Cookie Monster on filming a segment called C is for Cammy!

Living in a world with Rett has been hardest on my parents, but I am as happy as can be because I do not know anything different. I am always surrounded by love and support, and I bring immense joy and inspiration to others. What could be more important than that?!?! My family and I constantly tell people that Rett is messing with the wrong kid. Cammy Can!

Please check out a couple of videos to learn more about me.

 

Featured Angel: Victoria Francesca Calabrese

Hello, my name is Victoria Francesca Calabrese. I was born November 11, 2004. My friends call me Tori and my Mom calls me her angel.

When I was 7 months old, doctors were concerned with my low gross motor skills and referred me to the Infants and Toddlers program. Physical Therapy was started and by 9 months old I still was not making significant progress with my gross motor milestones, so I was referred for further treatment and testing.

Then, on October 23, 2005 I was diagnosed with Rett Syndrome. At first, my family was very sad and had a very difficult time understanding how my condition would affect all of our lives. Since that time, my family has grown accustomed to my differences and they have come to see me as a beautiful blessing from God.

I have many Doctors and Therapist who help me with the medical conditions related to my diagnosis. Because of my medical needs I have a nurse who comes to school with me each day and a nurse who watches me each night while I am sleeping. I love both of my nurses and they have become a very important part in our family’s lives.

I have a wheelchair and I need a lot of help with all my daily activities. I receive physical therapy each day at school and my Mom takes me to a therapist who goes swimming with me. I love the pool and it helps my tight muscles loosen up. I also have a lot of help with communication. My teacher is trying to help me learn how to communicate with other people. My family understands what I need and want most of the time, but it is a lot harder with people who don’t know as well. Mom is trying to get me a special computer to help me with my speech.

I have an older brother and sister and they help me a lot. I play with my brother who makes funny faces and likes to give me raspberries on my belly. My sister likes to play music and sing with me. I love my brother and sister very much. I am a happy girl most of the time and enjoy being around people. Mom calls me a social butterfly. Sometimes I just like to people watch.

Our family has lots of wonderful friends who like to spend time with us. We go to many activities and one of my favorites is church. I am very happy when I am there and I like to make sure Father knows I am there when he is saying the homily. He makes me laugh. We know lots of nice people at church and they all pray for me and my family.

Miracles can happen and my family prays each day for a miracle to happen for me and all my sisters with Rett Syndrome.

 

Featured Angel: Gabriella Leone Peace

Hi! My name is Gabriella Leone Peace but everyone calls me Ella. I am 2 years old and live with my Mommy and Daddy in Carrollton/Dallas, TX. I am at my happiest when there is a big crowd around me. I smile and laugh all the time. I enjoy sitting in my stroller as we walk through malls or around the pond near my house. I also love to watch football and basketball with my Daddy, but my favorite shows are Yo Gabba Gabba and Dora the Explorer. They really make me laugh a lot.

I was diagnosed with Rett Syndrome last September. My family and wonderful daycare teachers had been getting worried for some time since I was getting sick a lot, I was always clapping my hands, I didn’t want to play with my toys, never learnt to pull up or crawl and couldn’t pick up my Cheerios by myself anymore. At first, my family was sad, but now everyone has gotten used to my differences. I get a lot of therapy – 3 times a week and my Doctors and Therapists really get me to work on stretching and exercising and communication. I am starting to get my point across with my real meaningful stares! I also hope to learn to walk soon.

I have a lot of family and friends who really love me and show me all the time. Soon I am going to have a new little sibling to play with. So even more people to love me! I have been going to the Children’s Beginning daycare since I was 2 months old so my teachers really know me and love me a lot. I love all of the teachers, but Ms. Engracia and Ms. Maria are very special. They really understand me well. My Nanna comes to take care of me often during the week. She sings to me and reads me lots of good books. My Nanny recently came from Alaska to keep me for a few days while Mommy and Daddy went on a little vacation. Nanny joked that the hardest thing about caring for me is putting my false eyelashes on every morning. She is funny. They are not false! They are really mine and everyone tells me how pretty my eyes are. I love getting all dressed up and taking pictures- a good thing too, because my mommy takes pictures of me all the time.

My mommy is telling everyone about Rett Syndrome now. She says that they are going to find a cure soon and I believe her, although I am very happy just the way I am.

 

Featured Angel: Kaitlyn Kelly

My name is Kaitlyn Kelly and I am from Bladenboro, NC. I am 4 years old and I am a Pre-K student in Mrs. Debbie Simmons class at Whiteville Primary School. Mrs. Debbie is such a wonderful teacher; she actually is the one who told my mommy to have me checked out for Rett syndrome! (Thank you, Mrs. Debbie. More than you’ll ever know). I get Occupational Therapy, Speech Therapy & Physical Therapy every week. I cannot talk anymore but Mommy knows what I want and need without me telling her. Mommy says my big blue eyes and my pretty smile tell it all. I am an only child so far and I think I like it that way! I love to cuddle with Mommy & Daddy while watching my Disney movies. I was just fitted last week for my braces to help support My ankles so I can walk better. I can walk really well in my big girl walker and hopefully the braces will let me walk by myself. My favorite foods are Chicken Nuggets, French Fries & Cheez-Its! I love to go to McDonalds. I even clap when I see the golden arches!

I have so many people that love me. I am such a lucky little girl to not have to go through this alone. My mommy cries sometimes but I rub her face and smile and that dries her tears. She sings "You Are My Sunshine" to me every day. Ever since the day I was born! I am a special little girl in so many ways and prayer heals all. Even Me! My mommy and I didn’t know what Rett syndrome was until just a few months ago when I started the process of being diagnosed. Now it all falls together. I started having seizures when I was 6 months old and by 3 I couldn’t say any words anymore. I am trying real hard now to talk and soon I will! Mommy, Daddy and I are going to let everyone in our community know what Rett syndrome is and how they can help Me and all my other brothers & sisters around the world with Rett syndrome!

 

Featured Angel: Leev Novel

Dear all, my name is Leev which means "life" and "protection." I am three years old. It is true that I am full of life, often happy, other times more observant and sometimes angry. But every day I prove to fight Rett syndrome.

I attend the local nursery where I made friends and even have a boyfriend who is sweet, but sometimes surprises me by giving me a big cuddle.

I love babies and I ask about them, so sometimes my caregiver brings me to the babies' room so that I can look after them. At the nursery I use a walking device that enables me to move around independently.

I look forward to the week-end and ask for "Papa, Maman" so that we can spend time together. We always enjoy lots of activities, meeting family and friends. We go to the theater, the circus and the zoo (I love animals). We also go to the swimming pool or to the sleigh in the winter. I love listening to music especially rock and roll (my Dad is very proud of that) and electro music which makes me dance.

I live in Geneva, Switzerland, and my parents have registered me for the IGF-1 clinical trial that will take place in Boston. If I am accepted in the program I will have the chance to visit USA, maybe meet some of you and also hopefully have the chance to see "Barney!" I just can't get enough Barney watching! My parents need to order the dvd on the internet because very few people know about Barney in Switzerland.

Thank you for meeting me! I hope to meet many of you in person soon if I am able to come for the IGF-1 trials! – Keep your fingers crossed for me.

 

Featured Angel: Haylee Bautista

Aloha! My Name is Haylee Bautista! I am 5 years old. I cannot walk or talk but my mom says "I say it all with my eyes." I have tons of friends and my teachers and family just love me. They say I have an incredibly contagious laugh and beautiful smile! I love to eat ALL of my school lunch. I love Elmo’s world and Barney! I have 2 sisters and 3 brothers but my parents say that I am the only princess! My family loves me and prays that I will continue to be HAPPY and HEALTHY!

My family, especially my parents, does so much for me every day. They are always talking about me to others and using my story to spread awareness for Rett syndrome. I am a very lucky little girl to have so many people around me who love and care for me so much. I hope that one day I can say "thank you" for all they have done!

 

Featured Angel: Sonora (Sonny) Bodine Poulton

Greetings! I am Sonora (Sonny) Bodine Poulton. I am 12 years old. I live with my mom in Ohio. I don’t have siblings. So being an only child makes me extra special. I go to school and attend the 7th grade. I use devices to communicate and have a computer that works by eye gaze. I received a certificate for being able to pick my name out on the computer 100% when tested. I walk and am close to being potty trained. I have learned to make special sounds when I need to go to the toilet. My dad and his parents, grandma and grandpa Poulton, live in Tennessee. I go there and stay frequently. Grandpa is very special to me. We can really communicate. He can read me very well and is so patient! I like to do fun things like go bowling, swimming, to the store for a cookie and McDonalds for a yogurt parfait. I love SpongeBob Squarepants cartoons. They make me smile and laugh. I get to watch him when I am really good at school and when I travel to Tennessee. My bedroom is decorated in SpongeBob. I enjoy hugging my pillow and rolling up in my comforter with him. I have several cousins that know I am special. They treat me very nicely. I like to tease. I sneak up behind grandpa and kiss him on the bald head. That makes us both smile. I love my family and they know by my smiles, hugs, and kisses. They all love me. I know through their affection and loving care.

Happy wishes, Sonny

 

Featured Angel: Kayla Cox

Hello, my name is Kayla Marie Cox. I am 14 years old and I am in the 8th grade. Next year, I will graduate to High School, as a 9th grader. I live in Shepherdsville, Kentucky with my Mom and my little brother. We have 2 dogs, Rosco and Lily.

My mom, Stephanie Miller, is 34yrs old. Mommy has given me a baby brother, Nathan; he is 3. She is also going to be giving me a new brother or sister on April 29th, 2011.

My Daddy, Tony Cox, is 36yrs old, and he has also given me 2 younger brothers: Waylan and Colton.

I have so many people that care for me and love me; I never get lonely. Even though I can't tell them that I love them all, I can show them with my eyes, my beautiful smile and my body.

I love going to school. Getting to be with my friends and ride the bus is exciting for me. I have wonderful Teachers, Therapists and a lot of great friends.

My favorite animals are Horses. My favorite TV shows are Barney and Wiggles. I love going horseback riding, watching Barney and Wiggles and spending time with all of my family and friends. These are my favorite things in the whole world. These things keep me happy and entertained.

I have good days and bad. Even with my disability I wake up each morning with a smile!

I am grateful for my Mom and Teachers that help me every day. These are the everyday things that some people take for granite: like feeding, changing, clothing and bathing me. I have to wear braces on my legs to help me walk. Some days I can walk, some days I can't; but, I have a wheelchair to help me get around.

I live each day around everyone I love and being happy, not worrying about my disability. My mom and I will wait for that call that WILL come saying that "There is a cure" For me, and all of the others out there!! - Hopefully in my lifetime, but if not in mine, I know it will be soon!

Please help us find a cure and donate today!!!

 

Featured Angel: Riley Steventon

Hi, my name is Riley Steventon and I am four years old and I have Rett syndrome. Some days Rett syndrome has me too, but I am determined to not let those days out weigh the days that I have it. My mommy and daddy help me with that a lot. Before they even knew my diagnosis, they had me in therapies to help. Since then I have learned how to walk, how to use my communication devices, and much more. I attend school and am even in an inclusion classroom. Mommy volunteers in the class at least once a month (I honestly think it helps her feel more comfortable with me gone all the time). Daddy does as much with me as possible too. Sometimes it’s harder than others though because my daddy is in the army and has to go away for more than a year at a time (like when I got my diagnosis, he was gone then, and he is gone again right now). People always say to mommy and daddy that it must be hard to deal with the diagnosis and all that it encompasses, but they always tell everyone that this is just how I am and since I am an only child, that they don’t know what it’s like to raise a typical child. They think that seems harder! Besides, I am their little angel and they love me just the way that I am. They are always telling people about me, face to face, newspapers, and even magazines. I know that they are proud of me, and will always continue to educate people on Rett syndrome and me, because like I said, I am their little angel and they love me!