Duchenne muscular dystrophy (DMD) is a genetic disorder characterized by progressive muscle degeneration and weakness. It is one of nine types of muscular dystrophy. DMD is caused by an absence of Dystrophin, a protein that helps keep muscle cells intact. Symptom onset is in early childhood, usually between ages 3 and 5. The disease primarily affects boys, but in rare cases it can affect girls.
My husband John and I are fighting Duchenne on behalf of his son George who has been in a wheelchair since the age of 9. George is 16 years old now and we fight to give him the life of a typical teenager. We do the best we can to make our home accessible and find opportunities and activities that bring joy to his life while we watch his health decline and so does he. We try to stay positive in the face of this inevitable death sentence.
This fundraiser is being put on by the amazing folks at Team Joseph a group that we connected with through friends and parents that are involved through UCLA where we take George for his MDA clinic visits. Team Joseph is leading the fight against Duchenne by raising funds for research and the Duchenne Family Assistance Program. The DFAP helps make it possible to bring families like ours to the annual Parent Project Muscular Dystrophy Conference by providing help in the form of financial aid for lodging, transportation etc.
Conferences are so important to families dealing with the devastating, life limiting effects of Duchenne. It is so important that we, as a community, are able to stay educated about innovations in medicine and medical equipment, the natural course that this conditions takes and of highest import, connect with other families that are facing the same monster. These conferences bring together Physicians, Scientists, Providers and Parents in an open discussion about ways we can fight the good fight on behalf of our sons.
As parents of children with a rare disease, it is CRUCIAL that we have a sense of strength gained from each other and our experiences which can be so different yet all so much the same. It is also of utmost importance that we are engaged and proactively advocating in the push forward in a positive direction. As a rare disease, DMD does not receive the substantial influxes of money from the government, nor from huge international groups like cancer, AIDS and heart disease does as it affects such a small portion of the population. But this small group is made up of our sons, completely innocent victims of a catastrophic disease that robs them slowly of their muscle function, rendering them absolutely dependent before it ultimately takes their life, often before their 25th birthday.
Please help us in our fight by doing what you can, every bit counts, especially right now while we have generous donors who will match every dollar.
Thank you for taking the time to read this, your support is priceless.
Sincerely,
Rachel & John Replogle
Ventura, CA
