James’ Story

It was such a happy day when perfectly beautiful baby James entered this world. It was the beginning of a new life, a new adventure.

No one expected that all of that would change just a mere 3 months later. It was then that the newborn screening results were revealed to James’ parents; Duchenne Muscular Dystrophy (DMD).

“Our world was forever changed! We read about wheelchairs, steroids, and congestive heart failure. Scariest of all were the words ‘no cure.’ Seven years later there is still no cure, but thanks to the amazing doctors at NCH, there is hope,” says James’ mom, Mardee.

Affecting mostly boys, DMD slowly destroys muscle fibers in every part of the body, including the heart. It eventually steals a child’s ability to walk, run and breathe. Twenty years ago, most children with DMD would die of heart failure in their teens or early twenties. That changed when Dr. Jerry Mendell of Nationwide Children’s Hospital, working with other clinician scientists, proved that steroid therapy could significantly slow the disease’s progression. The National Institutes of Health has designated Nationwide Children’s as a Paul. D. Wellstone Muscular Dystrophy Cooperative Research Center, which helps enable our researchers to continue their work.

“In the Duchenne community, Nationwide Children’s Hospital is THE place to take your child for the world’s best care. Our family knows we are blessed to live less than 15 minutes away from this amazing hospital where the doctors and therapists are experts in managing every aspect of my son’s complicated condition,” adds Mardee.

His condition may be complicated, but you wouldn’t know it by looking at James’ big, amazing smile. He is enjoying life. He loves football, especially The Ohio State Buckeyes; geography, flags, maps, learning about other countries, and playing games. And he is a super big fan of Star Wars. No doubt he will be sharing his intergalactic smile with all the participants who come through his mile and wishing the finish line force be with them.

http://nchflutter.wpengine.com/wp-content/uploads/2015/10/Flutter_PatientChampion_James.jpg

It was such a happy day when perfectly beautiful baby James entered this world. It was the beginning of a new life, a new adventure.

No one expected that all of that would change just a mere 3 months later. It was then that the newborn screening results were revealed to James’ parents; Duchenne Muscular Dystrophy (DMD).

“Our world was forever changed! We read about wheelchairs, steroids, and congestive heart failure. Scariest of all were the words ‘no cure.’ Seven years later there is still no cure, but thanks to the amazing doctors at NCH, there is hope,” says James’ mom, Mardee.

Affecting mostly boys, DMD slowly destroys muscle fibers in every part of the body, including the heart. It eventually steals a child’s ability to walk, run and breathe. Twenty years ago, most children with DMD would die of heart failure in their teens or early twenties. That changed when Dr. Jerry Mendell of Nationwide Children’s Hospital, working with other clinician scientists, proved that steroid therapy could significantly slow the disease’s progression. The National Institutes of Health has designated Nationwide Children’s as a Paul. D. Wellstone Muscular Dystrophy Cooperative Research Center, which helps enable our researchers to continue their work.

“In the Duchenne community, Nationwide Children’s Hospital is THE place to take your child for the world’s best care. Our family knows we are blessed to live less than 15 minutes away from this amazing hospital where the doctors and therapists are experts in managing every aspect of my son’s complicated condition,” adds Mardee.

His condition may be complicated, but you wouldn’t know it by looking at James’ big, amazing smile. He is enjoying life. He loves football, especially The Ohio State Buckeyes; geography, flags, maps, learning about other countries, and playing games. And he is a super big fan of Star Wars. No doubt he will be sharing his intergalactic smile with all the participants who come through his mile and wishing the finish line force be with them.

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