Dianne DeMille / Nina Stuart Herrera
About one out of every 5,000 boys has Duchenne, and about 20,000 babies worldwide are born with it each year. Duchenne mostly affects boys and reaches across all races and cultures. Parent Project Muscular Dystrophy (PPMD) estimates that there are about 15,000 young men, as well as a few young women, living with Duchenne today in the United States.We were told Riley may need a wheelchair by the time he’s 10 years old and be dead by 17. We needed to focus on accepting this reality.It became abundantly clear that our family became stronger because of the hardships we encountered, but in the end, we truly found grace because we participated in Riley’s life.The Life of Riley: Living with Duchenne Muscular Dystrophy, Through A Mother’s Eyes, encapsulates the extraordinary life of someone who has faced immense challenges at a young age. Riley never gave up or lost hope that a way would be found to keep him going. It has been 31 years in the making because it took this long for Riley to allow his story to be written.It’s a narrative of the family’s collective journey as they grew alongside Riley and learned to understand his disease. It is nothing short of a miracle for one family with two brothers with Spinal Muscular Atrophy (SMA) who are still thriving. Greg is 62, and Dave is 59 years old, while their nephew, Riley, turned 31 on April 11, 2023, battling Duchenne Muscular Dystrophy (DMD).
