Noah is an incredibly imaginative, creative, kind, smart, compassionate, and sensitive little boy.  He loves Star Wars, Roblox, art, football, and weather. Noah has Duchenne Muscular Dystrophy which results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Dystrophin is what protects and repairs muscle, thus Duchenne affects the entire body. 

Today, Noah looks like any other boy, but he has less balance, gets tired more easily, and cannot do everything his peers can or it takes longer and more effort.  Noah has endured so much including a muscle biopsy, skin biopsy, broken his arm, has been on high-dose steroids for the last 6.5 years, been in a clinical trial for 3.5 years, and has an 6 hour infusion every 2-3 months to strengthen his bones, which are weakened by the steroids, for the last 2 years.  He’s been in weekly physical therapy since he was 2, tolerates nighttime ankle foot orthotics, countless medical test, blood tests, and procedures. He sees 7-8 specialists at least twice a years including at least one trip to Ohio.  He has traveled around the country seeking medical care and specialists including California, Texas, Ohio, Massachusetts, and have seen several specialists here in Florida.  

When his mom tells people he is the healthiest sick child you’ll ever meet, they don’t believe that this vivacious and active 9 year-old has a life-limiting form of muscular dystrophy.  Noah looks like any other boy upon first glance, but when he starts to climb, run, or jump, it becomes obvious that he is a little different.  Despite how strong he looks, his muscles are slowly wasting away and the things he enjoys doing today he may not be capable of doing tomorrow.