My son, Ryan, was diagnosed with Duchenne Muscular Dystrophy on May 29, 2008 at the age of two and a half. He has a frameshift mutation of exon 38. We knew shortly after he was born that something was wrong. He wasn't reaching the milestones like a typical child. After many tests, tears, and false hopes we were given the diagnosis we feared the most, Duchenne Muscular Dystrophy. In addition to his DMD, Ryan also faces the challenges of autism, suspected to come about as a result of his DMD. He is completely non-verbal and not toilet trained. This disease is hard enough when you understand what is happening. But my son is unable to understand.
Ryan is now eight years old and struggling every day with issues that no child should have to endure. He has had serial casting, day-time AFOs, and night splints. He is growing weaker at an alarming rate and will need the assistance of a wheelchair very soon. He attends an amazing developmental school in our area in an SXI classroom. He receives physical therapy, occupational therapy, and speech therapy weekly. Living with Duchenne Muscular Dystrophy has become the ultimate challenge to the strength and faith of our family.
I believe there should be more extensive approaches to therapy for children with this disease. I also would like to see more support groups and on-line forums to connect families of children with DMD. Comprehensive programs besides the MDA clinics would also be beneficial to families affected by this horrible disease.