Grandparents Network

Grandparents are such special people to begin with. However, a grandparent to a Rett Angel is even more special. These children (and your children) love you and need you. Even if you are not close-by in proximity, you can be in spirit by showing your love, care and concern. This network is a primarily email based community that will strive to help you understand Rett syndrome better as well as how you can help your children cope with their diagnosed child.

 

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Featured Grandparents

The Featured Grandparent(s)  gives Rettsyndrome.org the opportunity to highlight and show our appreciation for some of the very special individuals who make up the Grandparents Network. We will highlight the grandparent(s) of one of our beautiful angels to allow you to get to know some of the amazing members of this network, learn about their beloved angel, a little bit about their journey and what she means to them. We will also share some of the remarkable things they have done as grandparents to support their angel and Rettsyndrome.org.

To be a Featured Grandparent(s), please send the above information to admin@rettsyndrome.org.

Featured Grandparents

September, 2016: Betty Proulx
Kaley’s love for her Grammy and Poppy is apparent in the smiles and laughs that she gives when she sees them and through the giggles she gives when Grammy gives her many kisses.

Click here to read more about Norah and her grandparents.

 

 

July, 2016: Tim and Cheri Lowe & Ann and Matt Joyce
Enough about my opinion of Norah’s grandparents...Here is Norah’s opinion of Grandma, Grandpa, Nonnie, and Poppie:
(Using her Tobii Eye Gaze, I asked Norah to say some things about her grandparents, here are the words and phrases she chose)

-    “I like”, “a great friend”, “thank you”, “fun”, “reading”, “camping”, “silly”, “I love you”, “I love you”, “thank you”, “later gator”.

Click here to read more about Norah and her grandparents.

 

 

May, 2016: Linda and Joe Klare
Just mention the names Maw Maw and Paw Paw to Gabby and her eyes will light up.  Pull down their street and you will hear Gabby start to yell, clap and wave her arms with excitement.  Linda and Joe Klare love spending time with their granddaughter, Gabriela “Gabby” Rodriguez. 

Click here to read more about Gabby and her grandparents.

 

 

 

April, 2016: Walt and Maureen Lee
“Grandma and Grandpa,” also known as Walt and Maureen Lee, are the epitome of amazing grandparents.  8 years ago, they sat anxiously in a hospital lobby awaiting the arrival of their 4th grandchild.  They adored their beautiful granddaughter, Alyssa, but little did they know the special relationship they would develop with her.

Click here to read more about Alyssa and her grandparents.

 

 2016 Grandparents of the Month - March

March, 2016: Grandma Donna, Papa Jim, Grammy, Papa Cecil and Grandma Debbi
The day we received that phone call – the one that shook the idea of what her future would look like – we immediately called our families.  It was that day, August 25, 2010, that our family formed “Team Keira.”

Click here to read more about Keira and her grandparents. 

 

Kira

February, 2016: Harvey and Jeanne Radke
Anyone who has a child with special needs knows how important it is to have a network of family and friends for support. My parents, Harvey and Jeanne Radke, play a key role in our circle of support.

Click here to read more about Harvey and Jeanne Radke and granddaughter, Kira. 

 

 December Grandparent Website

December, 2015: Jerry and Karen Lancto
Jerry and I can’t imagine our lives without Tiffany.  She is our heart and we pray that she continues progressing and learning new ways of communicating. 

Click here to read more about Jerry and Karen Lancto and granddaughter, Tiffany. 

 

 Oct. Grandparents

October, 2015: John and Sue Gill
My parents adored and loved her from the second she was born.  From that day on, any opportunity they had to be with her and enjoy her, they did.  They would stop by the house almost daily to spend time with her and they even had her over for sleepovers and still do this today.

Click here to read more about John and Sue Gill and granddaughter, Emily. 

 

GP September

September, 2015: Joanne Ralston
Clinical studies continue to bring hope to all the families living with Rett Syndrome.  It is so important to get involved in any way you can to continue to raise money for research.  Every dollar makes a difference.

Click here to read more about Joanne Ralston and granddaughter, Sawyer. 

 

 Grandparent August

August, 2015: Patty Brennan
Sofia Elizabeth turned 13, (a teenager!) on June 26. She is the light of our lives. Our family , lopsided with boys was overjoyed at the birth of this beautiful girl. The dining room plate rail was lined with frilly, lacy dresses as friends and relatives came oohing and aahing over her. As the weeks and months went on little things became worrisome; like not grasping toys or moving around and crying non-stop. 

Click here to read more about Patty Brennan and granddaughter, Sofia. 

 

July

July, 2015
Although we all live in three very different parts of the US, we all are in on a common mission to give Elizabeth the best quality of life she can have.  Rett syndrome does not define Elizabeth or our family.  We define Rett syndrome. All of Elizabeth’s Grandparents provide the emotional support for us. Elizabeth adores each of them for what they give her, unconditional love. 

Click here to read more about Elizabeth and her Grandparents. 

May Grandparent

 

May, 2015: Kathy Barlow
Ashlin speaks volumes with her eyes and expressions. She has a lot to say when you take the time to "listen." Her giggles and belly laughs are infectious too! Just hearing them will make you laugh and giggle too!

 

Click here to read more about Kathy Barlow and granddaughter, Ashlin. 

 

Grandparent of the Month - April

April, 2015: Dee and Ken Laughlin
Our special granddaughter Blair is eight years old.  She is the youngest of three girls born to our daughter, Marissa and "son" Darrel. We love this special granddaughter and support the research which is so important for her future.

 

Click here to read more about Dee and Ken Laughlin and granddaughter, Blair. 

 

 

March, 2015: Dimas and Angela DeMello
When my parents found out they would be Grandparents, they were ecstatic. And when they found out, they would be Grandparents of a baby girl their eyes lit up like they had won the lottery.

Click here to read more about Dimas and Angela DeMello and granddaughter, Raquel. 

February, 2015: Breck Cayce
My granddaughter, Garnett Elizabeth Cayce, is 8 years old.  She is the most beautiful and happy young lady you will ever meet.  Born on April 2, 2006, what a wonderful day and every day since.

Click here to read more about Breck Cayce and granddaughter, Garnett. 

January, 2015: Jean Evelyn Hughes (Jean Jean)
I am Jean Evelyn Hughes and known to my grandchildren as "Jean Jean."  I have five grandchildren. The youngest, Luisa, was diagnosed with Rett syndrome this last summer.

Click here to read more about Jean and granddaughter, Luisa. 

 

December, 2014: Terri and Lonnie Groteluschen
On May 11, 2011, our granddaughter, Abriella was born and she weighed almost 8 lbs. We were thrilled that our daughter had a beautiful red-haired little girl as they already had a 5 year old boy.

Click here to read more about Terri, Lonnie and granddaughter, Abriella. 

November, 2014: Anita and Brent Poulton
Our beautiful granddaughter is Sonora Lynne Poulton. She is 16 years old. She has gorgeous blue eyes with black eyelashes.  She uses them to flirt with Dr. Percy when we take her for her NIH visits.  Sonora is in the eleventh grade in a special school.  She is able to walk and has some words.  Hurry and no are favorites.  Overall she has been very healthy. 

Click here to read more about Anita, Brent and granddaughter, Sonora. 

October, 2014: Debra and Clarence Stage
We're Debra and Clarence Stage (known as Nana & Papa), the very proud grandparents of Riley Steventon, our first grandchild and only granddaughter. Riley was born to our daughter, Jess, and son-in-law, Alan, on September 1, 2006 with some tumultuous concerns.  The umbilical cord was wrapped around her neck, she developed Group Beta Strep, and she was put in the NIC unit for a week.  However, once out of the hospital she started growing and developing normally and we were all happy.

Click here to read more about Debra, Clarence and granddaughter, Riley. 

September, 2014: Chris Olson
I feel honored to be grandparent of the month and to share my story about my granddaughter, Brooke.  Brooke got off to a rough start as she was born two months early but bypassed all obstacles that some premature babies face.  She was (and still is) a beautiful child passing all milestones typical of babies up until the walking stage... that’s when my daughter knew something wasn’t right.  How I hoped that Brooke was just a little slow in learning to walk, but soon I started to notice the signs of regression and the diagnosis came just before she turned two.

Click here to read more about Chris and granddaughter, Brooke. 

August, 2014: Diane and Doug Lee
Our granddaughter, Mary Claire, is 14 years old. She was born on Valentine's Day, 2000, and filled our hearts and our home with love.

Less than two months before Mary Claire's birth, our son completed his masters degree in occupational therapy. He and his wife were living in Dallas, TX, but asked to live with us in Mississippi until he found employment and a home. It was pure joy for our first Grandchild to be born and then live in our home!

Click here to read more about Diane, Doug and their granddaughter, Mary Claire. 

July, 2014: Peter and Suzie Rivo Solender
We were so thrilled when our daughter and son in law told us they were expecting again.  Their first child was 6 and they so wanted a sibling for her.

Rachel came to Lisa, Jack and Jenny’s world on January 17th, 2009 and was immediately taken to the NICU due to fluid in her lungs.  She came home 16 days later only to be admitted to Buffalo Children’s Hospital within a week.  Once released 5 days later, a new chapter in their lives began.

Click here to read more about Suzie, Peter and their granddaughter, Rachel. 

June, 2014: Lee Bromley
As was the case with her parents and with most Rett parents and grandparents, the day of Gabriella’s (Ella) diagnosis was one of the most difficult days of my life.

It took a while to be able to accept that Ella was different and that we would have to adapt to her.  We can’t buy her toys since she doesn’t play, so, instead, we buy her the prettiest clothes we can find and love to decorate her bedroom.

Click here to read more about Lee and her granddaughter, Ella. 

May, 2014: Sandy Sher
Lillian Sophie Opinsky is my only granddaughter out of my four grandchildren.  Of course she was special to me,  even  before I knew how special she really was.

She makes everyone around her that much more caring and sensitive; especially  her 10 year old brother Sam.  Her parents (my children) couldn’t be more caring and attentive to giving her the best care any parents could and every opportunity.

Click here to read more about Lillian and Sandy.

April, 2014: Judy and Rick Lewis (Pappy and Grandma)
Keira was born in 2008 and her diagnosis came in 2011 while her father was on his third deployment in Afghanistan. Her mother contacted us to come to Missouri the day after Christmas as she did not know how to handle Keira. Her mom stated, Keira would no longer hold her sippy cup, stopped talking and would not walk. So Christmas day we drove from Pennsylvania to Missouri to pick up Keira. Upon our return to Pittsburgh Keira was referred to Pittsburgh Children’s Hospital and following DNA testing, the diagnosis of Rett syndrome was received on February 4th.

Click here to read more about Judy, Rick and Keira.

March, 2014: Diane and Joe LoBuono (nana and papa)
Miss Olivia Elizabeth Twigg, our first grandchild, was born on September 11, 2007.  She was so special to me right from the start.  My daughter allowed me to be in the delivery room when Olivia was born and we connected at that moment!  What a joy!  She was so perfect in every way.  She smiled and laughed all the time and even walked at 9 months of age!  At around 14 months of age, we noticed Olivia’s smiles disappear and she started to become withdrawn.

Click here to read more about Pat, Larry and Charlotte.

 

February, 2014: Pat and Larry Calderazzi
Our Charlotte is now nine years old, so it has been almost seven years since she was diagnosed with Rett syndrome. She lives in Northern Virginia with her parents, Anthony and Kathrine, her older sister, Zoe, her younger twin sisters, Natalie and Ava, and their family dog, Lucy.  We, Nana and Pop Pop, usually call her 'Charlie'. 

Click here to read more about Pat, Larry and Charlotte.

December, 2013: Susan and Ronnie Brackett--Lebanon, MO
Our Granddaughter Chelsie was born July 21, 2010 (on her due date) and she was perfect in every way!   She had our hearts from the start.  Chelsie is our first and only grandchild and seemed to do everything on time until about 18 months; when we started noticing her not speaking as many words as the other children her age.  Doctors seemed to think it was just over reactive parents and first time grandparents.  We did not give up that easy; after many more questions Chelsie got connected with Missouri’s “First Steps” program, who finally got the ball rolling and the testing began.  Six months later, in December 2013, we found out she had Rett syndrome.

Yes, I would LOVE to hear her say, “Grandma I love you,” just like all the other grandparents, but I see it in her eyes and smile and that will have to do for now.

Click here to meet Susan, Ronnie and Chelsie.