Addison's Story


Our sweet Addison was born on March 8, 2008. She was an adorable baby from the moment she came out! My husband and I had a feeling before she was born that she would have CMT.  We had cord blood taken that day and sent to Athena Diagnostics for testing.  Six weeks later, we got the news we had been trying to prepare for.....Addison was positive for CMT 1A.



 When Addison was about a year old, prior to her starting to walk, we knew that we needed to start looking into an orthopedic doctor for her to see for her CMT.  We wanted to be as proactive as we possible could.  My hairstylist recommended applying for her to be a patient at Shriner's Hospital in Salt Lake City.  I did, and then didn't expect to hear anything for a few weeks.  A week later, while we were on vacation in Arizona, I got the call that Addison had been accepted as a patient at Shriner's.  What a relief and a blessing!  Her first appointment was a couple months later, and I was unbelievably impressed.  The staff there is absolutely amazing, and so accommodating to us and our family.  Addison goes for appointments every six months to monitor her symptoms. 



Today, Addison is an energetic, imaginative, spunky, smart, sweet seven-year old.  She loves riding her scooter and bike, playing t-ball, drawing, singing, and just hanging out with people. Addison is showing some symptoms of CMT, mostly toe-walking and a lack of coordination.  She is fully aware of her CMT, and has accepted it with amazing grace and tenacity!  She is a huge advocate for finding a treatment, and is such an inspiration to me!   I hope that her determined attitude will continue throughout the rest of her life.  My hope is for a cure for CMT and the possibility of symptom reversal for my sweet daughter.