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Five years ago Jackson was just a typical little boy who loved to play sports, run around outside and walk his dog.
Today, Jackson still loves to do all those things. But he is forced to do them from the confines of his wheelchair. That’s because Jackson has Duchenne Muscular Dystrophy.
Duchenne Muscular Dystrophy is a disease that typically steals boys’ ability to walk by the time they are teenagers. The majority won’t live to see their 30th birthday. And there is no cure.
By all accounts, that means there should be no possible way for a little boy with Duchenne Muscular Dystrophy to complete a marathon. But the care team at Nationwide Children’s Hospital found a way.
The End Duchenne team was formed for the 2017 Nationwide Children’s Hospital Columbus Marathon. When asked why they run, his team wrote this…
Why do we run? Why do we run a marathon? Why are we planning to push an 11-year-old boy in a wheelchair through a marathon? It’s simple. We can. We can walk, we can run, we can push a chair — but the boy in the chair cannot. He cannot run. He cannot walk. He cannot climb up the stairs to his room. He cannot lift his arms over his head to give his mom a hug. His name is Jackson, and he has Duchenne Muscular Dystrophy (DMD). Like all boys with this devastating diagnosis, it does not define them — but it does change their lives, and the lives of everyone around them.
Duchenne Muscular Dystrophy is a genetically inherited, terminal disease that affects mostly boys, causing progressive muscle weakness and gradually steals boys’ ability to walk and their lives by their third decade of life.
Every member of this running team met Jackson due to his diagnosis of Duchenne Muscular Dystrophy and because of Nationwide Children’s Hospital. We all choose careers that put us on Jackson’s medical team. We found ourselves caring for a boy and his family. We are doctors, researchers, physical therapists, occupational therapists, and respiratory therapists. We found ourselves helping them cope with the terrible news of this diagnosis, providing them opportunities at life changing research, showing a mother how to stretch her son’s legs so they would not become contracted and teaching a father how to get a wheelchair into a vehicle. We wrote orders for medications, wheelchairs, breathing equipment- and then we went home. We walked to our cars and drove home.
But we did not forget Jackson, the boy who would speed through the clinic halls on his way to the physical therapy area to play a video game developed by our physical therapist. We did not forget his family, who we would spend hours with during clinic visits. We did not forget all the boys and their families who traveled to see us, to hope we had the answer that would help their boys keep walking. Keep living.
We at Nationwide’s Children’s Hospital MDA Care Center and The Center for Gene Therapy are working to find a cure to End DMD. We are working to help families cope with the devastating diagnosis of DMD until we find that cure. A cure that we are determined to produce. Every dollar our team raises as we push Jackson through the Columbus Marathon will go directly to the research that Dr. Kevin Flanigan and Dr. Jerry Mendell are currently working on in their effort to End DMD.
While Dr. Mendell has already changed the natural progression of DMD with early studies on the use of steroids as standard of care and the recent approval of Exondys 51, the only FDA approved treatment for DMD, our team is not done yet. Not by far! We are committed to change the projected and continue to provide hope to our boys and their families. We will continue to care for, to research, and on this day, to run to End DMD.
When we all join together to push Jackson through the Nationwide Children’s Hospital Columbus Marathon, we will be thinking of ALL the boys like Jackson. We will be thinking of how we are going to change his course, improve his life. We will be thinking of ALL the boys and families that we see in clinic.
WE WILL BE RUNNING FOR THEM ALL!