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Join us in our race to raise awareness and hopefully someday bring an END to Duchenne!
Our Story:
Mason (6) and Dawson (3) were diagnosed with Duchenne Muscular Dystrophy in the summer of 2021. This rare disease is a muscle wasting disease where the boys are breaking down muscle at a high rate, and their bodies are missing the dystrophin protein to repair them. The natural history of this disease is around the age of 7 the boys would start regressing with their gross motor skills and need a scooter to help them get around. The age of 10-12 they would be unable to walk and need a wheelchair. With every part of the body being a muscle it means that all functions slowly regress and life expectancy is into their 30s.
But, there is hope on the horizon! Gene therapy has come out for Duchenne patients and we are hopeful to keep the boys walking well into their adult life! Both boys are on a steroid regimen for now. Mason has been dosed with the clinical trial of Gene Therapy (this is not yet a cure but hopefully a huge stepping stone to get us to a cure). This summer we will be stacking therapies on Mason and getting him a weekly infusion as well. Dawson is currently getting weekly infusions of a therapy that will help a little with getting his body some of the protein it is missing, Dawson will also be dosed with Gene Therapy when he turns 4.
The future is bright and we hope to see the End to Duchenne in our boys lifetime!
