Noah R.

Noah is the brightest light that walks into any room. There is special aura about him that radiates warmth and love to all who meet him, Noah, almost 12, is an honor student, sports fanatic, especially loves Florida Panthers hockey, loves weather, art/drawing, gaming, 3-D printing, coding and his newest passion is power soccer. By looking at him, you wouldn’t guess that Noah’s been battling for his life since he was born. Noah was diagnosed with Duchenne Muscular Dystrophy (DMD) at age one after we learned his cousin, age 5, had a lack of dystrophin protein, leading to muscle degeneration and weakness. Boys with DMD lack the dystrophin protein in all their muscles, or it is nonfunctional, and scar tissue or fibrosis replace the muscle. This is a life limiting disease with typical loss of ambulation between the ages of 8 and 12.

DMD has shaped Noah’s entire life. Starting at 18 months old, he has seen several specialists and neuromuscular teams across the country, multiple times a year. Noah has endured both a muscle and skin biopsies and started his first clinical trial the week after his 6th birthday, which he was in for 5 years. Long-term steroid use weakens bones. When Noah was 7, he fell and broke his elbow, which began his journey with IV infusions for osteoporosis, which he now gets every six months.

Noah was doing well physically until he was nine years old, and had his first episode of myocarditis, an inflammation of the heart muscle. Noah has been hospitalized four other times and needed a cardiac ablation after his first episode. He has since had other heart arrhythmias during the episode. Noah has started to have pulmonary issues too. He had a cough assist machine for the last year and recently got a Bilevel Positive Airway Pressure (BiPAP) machine.

Noah has missed over 25 days of school this year because of hospitalization, illness or doctor’s appointments. He take eight medications, three supplements, and has infusions every six months. Noah wears ankle foot orthotics at night. He is still ambulatory, but uses a motorized wheelchair at school and for traveling long distances. Noah is at a very critical time in his journey, as any fall or major illness could be catastrophic for him.

Despite Duchenne Muscular Dystrophy being at the forefront of our lives, it does not rule Noah’s life. He lives by the motto that “he can do anything anyone else can do, but might need to do it a little differently”. Noah cannot play sports like his peers, so he has joined a power soccer team in Orlando, Dreamplex Dragons, where speed , endurance and stamina aren’t what makes someone a great athlete, but intelligence, understanding angles and knowing how to position your power soccer chair does. Noah is excited to be getting a service dog this summer, which will help offer even more independence. No one know what the future holds, so Noah lives for today and makes every day count.