Eight years ago, my nephew Ryan was diagnosed with Duchenne Muscular Dystrophy (DMD), a rare progressive muscle-wasting disorder that affects every muscle in the body including heart, lungs and can eventually lead to paralysis.

There is no cure, but physical therapy and medications can help control symptoms and improve quality of life.

Ryan is 14 years old and has spent his last 5 years in a wheelchair. He is an old soul – smart and witty with a great sense of humor.

He spends his days video-gaming and watching his two favorite NY teams – the Rangers and Giants. He also enjoys being in a classroom and spending time with his classmates so he can be engaged and social.

Ryan has the most incredible older brother, Jarett who looks after him like an angel and they are inseparable.

Last summer, an above-ground pool was installed for Ryan so he can enjoy one of his favorite activities; this also required a mechanical pool lift to make it easier for him to access.

To not be able to use those wonderful muscular legs of his and walk, run or ride a bike like every child deserves is heart-breaking.

Ryan’s parents, Tamas and Barbara have gone above and beyond to make his life as comfortable and normal as possible.

Their many expenses include treatment, medication, trials, nutritionists, equipment to make his quality of life easier and now he is in dire need of a roll-in shower for his wheelchair so he can have the privacy he needs to bathe himself. Ultimately, creating a wheelchair-friendly home is the goal.

Our family will be most grateful for anything you can contribute. With a long road ahead of Ryan, we want to do all that we can to help make his life a little easier and keep his muscles staying strong as long as possible.

For more information on DMD please go to this link: https://www.mda.org/disease/duchenne-muscular-dystrophy