When our son Andrew turned 6 months old, we realized there was something different about him. He was falling behind developmentally, and we started the journey to find out why. After a year of therapies, genetic testing, and various doctors’ appointments, we finally received a diagnosis that would change our world.

In March 2021, Andrew was diagnosed with Duchenne Muscular Dystrophy (DMD), a rare progressive muscle wasting disease. Unfortunately, it is a terminal condition, with an average lifespan ranging between 20-30 years old. It can affect all parts of the body. For Andrew that means frequent falls, physical and mental developmental delays, and fatigue. DMD can also cause autism, which has proven challenging.

For Andrew, DMD means many hardships. He cannot keep up with kids at the playground. He will never be able to play sports. Processing information and communicating are difficult for him. As this disease progresses, he will become wheelchair bound and rely on us for all of his needs. While it’s hard to wrap our minds around, we are determined to give him the best quality of life possible.

At this time there is no cure for Duchenne. So we will keep fighting to raise awareness and funds for our son and the organizations that support DMD research and advocacy.