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Learning your child has a terminal illness is one of the most devastating things a parent can experience. I experienced that moment on October 26, 2005 when my 3-year-old son Devin was diagnosed with Duchenne muscular dystrophy (DMD), a rare genetic disorder characterized by progressive loss of muscle function. I’ll never forget hearing those dreaded words as the doctor read the genetic test results aloud.

I was completely crushed. All the dreams I had for our lives together were suddenly placed in serious doubt. Instead of thinking about Devin growing up and having a family of his own someday, I was left wondering if he’d even live to see adulthood. The overwhelming fear of how the disease would progress and the toll it would take on my son left me feeling angry, anxious, depressed, and alone.