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.
July 2026
This summer has been a mix of amazing and stressful. Noah attended a 2-week intensive service dog training session in Connecticut, where he matched with his service dog and learned how to handle her. This was more mentally and physically demanding than we could have predicted. Noah's hard work paid off, and he passed the public access test to become the sole handler. Noah was only the second 12-year-old in the organization's history to become the sole handler. For most of the children, they are team handlers, where the parent is primary, because of how challenging it is. After experiencing those two weeks, it was clear that Noah wouldn't have been able to handle it alone at a younger age. Noah's dog can open doors, retrieve items, pick up things, turn lights on and off, push elevator buttons, and so much more. His dog is also learning to sense when Noah is having chest pain or difficulty breathing and has started alerting him so he can take care of himself. She puts her paws on his chest to help give pressure. The dog is also learning Noah's emotions and will offer her head or paws to help comfort him.
Noah wasn't home for more than 48 hours from training when he slipped on a wet floor at a restaurant. I immediately thought he broke his leg, as did everyone with us. Noah was taken by ambulance to the emergency room, where they focused on the wrong hip despite being told that, so he had to follow up with his own doctors. I wish paramedics could get authorization to take children, especially those who are medically complex, to the children’s hospital that treats them. After seeing his pediatrician, orthopedic specialist, having a stat MRI, and a visit with his physical therapist, Noah was diagnosed with a bone bruise in his femoral neck, edema, and some mild bleeding. He was unable to independently move his leg or walk for a week. Noah's orthopedist said the only reason he didn't break his leg is that he has been on infusions to strengthen his bones for the last 4 years. The injury will take 3 weeks to heal, but Noah should recover.
Caring for Noah during the week he was unable to walk or even move his leg independently drove home the reality of what we will face in the future. Noah recently turned 12, and with the average age of loss of ambulation for Duchenne being ages 8-12, a hard fall could be life-changing. Most clinical trials require participants to be ambulatory, and with our eye on a few beginning at the end of the year, it is crucial that Noah remains as stable as possible so he has a chance to screen for them. We are traveling to Texas in the fall to meet with the neurologist spearheading two of these trials. The constant anxiety can be overwhelming. We have had to add more medical equipment, including a Hoyer lift, slide boards, ramps, and a wheelchair shower chair.
Noah continues with his infusions for his bones and doctor’s appointments every 6 months for the neuromuscular clinic and as needed with other providers. He continues to struggle with cardiac issues so we are in frequent contact with his cardiologist. Now that Noah is 12, his endocrinologist, immunologist, and cardiologist would like to each add new medications; two of the medications are injectables. I don’t know how you convince a child to take two shots a week so we will be discussing all of this at his next neuromuscular clinic visit later this month. Noah has added a BiPAP but is struggling to use it, so we are just practicing with it, and he continues to use his cough assist with any respiratory illness.
Noah’s first season of power soccer is over! He loves everything about the sport. He missed Nationals this year because of the service dog training but looks forward to his second season starting in the Fall. The rest of the summer will be spent healing and bonding with his service dog except for when he attends MDA camp.
