Dads Network

As a dad to a Rett Angel, you are one of, if not the, most important person in your angel’s life. Your child loves you and needs you. This network is a primarily email based community that will strive to help you understand Rett syndrome better as you cope the diagnosis and your child. This network also has a Facebook presence. Please register to be a part of the email community as well as connect with the Rettsyndrome.org Dads Network on Facebook to get the full experience.

 

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Featured Dads of the Month

The Dad of the Month gives Rettsyndrome.org the opportunity to highlight and show our appreciation for some of the very special individuals who make up the Dads Network. Each month we will highlight a dad 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 him. We will also share some of the remarkable things they have done as a dad to support their angel and Rettsyndrome.org.

To be featured as Dad of the Month, please send the following to admin@rettsyndrome.org.

Featured Dads

 

September, 2016: Jon Brown

As much as I like to think that Lily's is a mama's girl, I know her favorite part of every day is when she gets her bedtime snuggles with daddy.

Click here to read more about Jon and Lily.

 

August, 2016: Ezra Gwilliam

Well with an angel in the family the sky is literally the limit! Elise’s spirit and smile are contagious her laughter and keen eyes fill your heart with warmth. She loves everybody and the world is a better place because of her—especially and including my world.

Click here to read more about Ezra and Elise.

 

 

 

July, 2016: Milo Andrews

I never question how much you care for me. What an amazing Daddy I have!

Click here to read more about Milo and Gia.

 

 

June, 2016: Brian Urban

Brian walked into this mess. Most people would've ran far and fast. Instead, he picked up Ashley and took my hand. He feeds her, carries her, dotes on her.

Click here to read more about Brian and Ashley.

 

 

 

May, 2016: Danny Warner

She is my motivation for the Rett Fundraising events and in life, so why not take her along with me.   She makes me push and become stronger, not just physically but mentally as well.

Click here to read more about Danny and Jaidyn.

 

 

March, 2016: Carl Sweeney

Holly has been my buddy since she was born. My eldest daughter was a mama’s girl and she clung to her day and night. My wife wore her like a necklace. I had two free arms. Holly was much more willing to be with me.

Click here to read more about Carl and Holly.

 

 February Dad of the Month

February, 2016: James Westgate

Over the months and years that followed we experienced anger, denial, grief and deep sadness as we came to terms with and finally accepted that Carys had always been this way. It was up to us to change our perception of normality, not to try change Carys or her condition. We immersed ourselves in finding out about genetics, treatments and therapies and through perseverance kept her eating, sitting and walking with our help.

Click here to read more about James and Carys.

 

Cammy Can

January, 2016: Bill Babiarz

Fast forward 5 years later and Cammy Can has educated hundreds of thousands of people out there about Rett syndrome. Cammy is loved and accepted by everyone; family, friends, strangers on the street, thousands on Facebook. Through all her and Jackie's hard work, she shows everyone how to make the most out of life, no matter what hand you've been dealt. She inspires others to be their best too.

Click here to read more about Bill and Cammy.

 

Dad of the Month - December 2015

December, 2015: Sean Reilly

Turns out, my true hero was born late morning on April 8, 2010.  Our third child and only daughter, Claire was perfect – instantly “daddy’s little girl” and ready to make her mark on the world.

Click here to read more about Sean and Claire.

 

November Dad of the Month

November, 2015: Jon Dunham

Marissa has changed my perspective on life. Here is a little girl who fights every day. Who smiles even though she is trapped in a body that just won’t do what she wants. She is very rarely unhappy and when she is it is because she is not feeling well. I once lived to work. I lived to be a police officer and a paramedic but now my perspective has changed. I now work to live and enjoy every moment I can with my little girl.

Click here to read more about Jon and Marissa.

 

October Dad of the Month

October, 2015: Shannon Santos

There is a lot that I remember, and there is a lot I want to forget, and through it all I never realized how much Rett syndrome has affected me as October 2015 (Rett Syndrome Awareness Month) will be a month that I will never forget, as I have openly shared what I have been unable to say. Writing about Melaina has been one of the most difficult, yet cathartic things I have done as I have found that I have been dealing with 5 years of pent up emotion about her diagnosis.

Click here to read more about Shannon and Melaina.

 

Justin and Jillian

 

June, 2015: Justin Endres

He can always make her smile and giggle – even on days when nothing seems to make her happy. There have been plenty of times when I have asked what was so funny and he replies, speaking to Jillian with a wink, “Oh it’s just between me and Jilly."

Click here to read more about Justin and Jillian.

Dad of Month - May

May, 2015: Gary Miller

When Erika is having a bad night, he will get up with her and hold her. They will go out in the living room and watch Wow Wow Wubzy, her favorite show. She knows she is safe in his arms, for they are strong and protective.

Click here to read more about Gary and Erika.

March, 2015: Ben Magno

Halloween changed forever in 2007. That was the day Campbell was born. She spent her first 11 days in NICU, due to non-Rett related aspiration. She was transported that night to a hospital almost 100 miles away. I followed the ambulance, and met her in her incubator. When the sun came up, there was a double rainbow outside the window.

Click here to read more about Ben and Campbell.

February, 2015: Doug Brunner

Can May 15, 1998 possibly be almost 17 years ago? That was the day I met Jessica for the first time. She put her little hand around my finger and grabbed my heart. Full term, seemingly hitting on all cylinders and I couldn’t have been a prouder dad.

Click here to read more about Doug and Jessica.

January, 2015: Britt Van Giesen

Be who you are, not who all expect you to be. You are the knight but in your own way. Take a little time each day to celebrate your success and don’t always focus on what needs to get done. If she and you are there tomorrow then count it as the first win of the day.

Click here to read more about Britt and Erika.

December, 2014: Henry Perez

My angel Lily turned 18 this past October and she makes me complete.  I love my wife Carolyn and our wonderful daughter Katie (11) very much and without them my life would be shallow. But Lily is the main person that keeps me motivated, humble, patient, inquisitive and so much more.

Click here to read more about Henry and Lily.

 Zoli and Sarai (1994)  

November, 2014: Scott Novitsky

Yes, your daughter has Rett syndrome, but I advise you not to go home and look it up. This is how the “unofficial” diagnosis of Rett was delivered. Wow, how would you like to be told that about your 17 month old daughter and not want to go and find out everything you can?

Click here to read more about Scott and Maiya.

 Zoli and Sarai (1994)  

October, 2014: Zoli Pethes

After finding out we were going to have a girl, my mind went through all the dreams of a father raising his daughter.  It is an old tradition that a woman would possess a formal dance card with names of suitors to dance with, and dancing is a strong tradition in my Hungarian culture.  I immediately made an image of a dance card for Sarai in my memory, and I was the first name on the card, Daddy-Zoli Pethes

...2014 and Sarai is now 21.  I am dreaming differently.  I am hoping to get Sarai a voice with an eye gaze computer device.  I would love to hear her purposely tell me that she loves me.  Sarai’s dance card is being filled again

Click here to read more about Zoli and Sarai.

   

September, 2014: Steve Mezzo

Brooke Addison Mezzo was born June 5, 2007. She was delivered via C-section and there were no complications. She scored 10 on the Apgar test and was beautiful. She was so sweet.

Her first year was filled with feeding issues caused by what we were told was reflux that caused her to "return" any food given to her. She had nominal floor activity sometimes rolling to a desired toy, but never crawling. Her mom, Brenda , and I became concerned.

Click here to read more about Steve and Brooke.

   

July, 2014: Anthony Madsen

My name is Anthony Madsen and I am from a small town in Northwest Indiana. My daughter, Abrianna Jade, is 10 years old.  Our story of Rett began around 2006. Abba was born July 5, 2004. We began to notice little details about her that just wasn't "normal."  She was a late walker and spoke very few words. She was a happy little girl who loved to laugh and giggle; she loved the Wiggles. Things never progressed with her speaking. While she was very mobile, her language never really developed. We had her ears checked and ran several more tests but everything checked out fine for the most part. Then we started to notice her dropping to her knees and at the same time she developed blank stares.

Click here to read more about Anthony and Abrianna.

   

June, 2014: Andy Kreher

My name is Andy Kreher.  My wonderful wife Amy and I are blessed with two amazing kids, Sophie (9) and Ryan (6).  After Sophie’s birth in 2006, we knew early on that something wasn’t right.  By 6 months or so, we noticed she wasn’t hitting milestones.  Our journey to Rett is not typical.  Sophie never walked or even crawled and has never spoken.  She did not have a severe regression, although in hindsight she did have some.

Click here to read more about Andy and Sophie.

May, 2014: David Luntz

“Rett Father.” I never thought I’d claim that title.  Being a father of two young men from a previous marriage, I was really excited when I found out I was having a daughter. Like most fathers, I immediately started dreaming of ballet classes, horses, boyfriends, prom and watching her grow into a woman with a family of her own.

Click here to read more about David and MJ.

April, 2014: Charlie Weaver

I am the proud father of three beautiful children and one amazing grandson, Jaxen. My daughters, Amber and Sara, are 21 and 14 and my son, Chance, is 18. Sara was diagnosed on July 7th, 2002 with Rett syndrome. It is a day that will forever be etched in my mind. It has completely changed our lives.

Click here to read more about Charlie and Sara.

March, 2014: Mike Prask

In March of 2010, just a few months before our daughter Zoe's second birthday, she was diagnosed with Rett syndrome.  We knew there was something wrong; we'd known for months that her development was delayed, and that the once bubbly and silly baby girl we had was slowly withdrawing from us, but we were at a loss as to how to help her. 

Click here to read more about Mike and Zoe.

 

February, 2013: Animesh Shah

I am a proud dad of the smart and beautiful Anushka who is going to be 10 years old in March. She goes to 3rd grade with her regular peers and learns at the same grade level and sings ‘One Direction’ with her friends. Most of the neighborhood and then some know her and know us as Anushka’s dad and mom.

Click here to read more about Animesh and Anushka.