Rare Stories: Meet Henry

Rare Stories: Meet Henry

Despite only recently celebrating his 5th birthday, Henry already has developed a strong fighter spirit.  This little warrior has Merosin-Deficient Congenital Muscular Dystrophy and lets nothing get in his way.  CMD can be hard to describe to young children,  but his school counselor has written a story about him that they share with his school classes each year to teach the kids. Henry says he usually just tells his friends his name and “that this is my wheelchair.” Most kids his age think his power wheelchair is super cool and eventually they don’t even notice it – “It’s just me.”

Henry also has a strong support system of family and friends who help him reach his goals and raise money for CMD research.  Although Henry is the inspiration behind “Henry’s Heroes”, a Muscular Dystrophy Association fundraising team, he lists his mom, Stephanie, as his own personal hero.

Henry’s “toys, wheelchair and Mario Brothers” make him most happy.  His wheelchair gives him the freedom of independent movement and lets him keep up with his friends.  He also says his “muscles and superman shirt” help make him strong, but if given the choice, “fire power, flying power and strong power” would be his preferred superpowers.

Henry is showing everyone that his rare disease diagnosis and wheelchair do not define him. He can do anything he puts his mind to and works hard (while having fun) to continue gaining skills in physical and occupational therapy. I’ve always found a child’s perspective on disease and disability to be refreshingly honest and hopeful, and Henry’s view is no different. This 5-year old wants anyone newly diagnosed with Merosin-Deficient Congenital Muscular Dystrophy to know that “it is okay.”  Cue heart melting.

Thanks for letting me tell your story, Henry!

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