My Son Is Living a Fuller Life Than We Ever Imagined

My oldest son with Duchenne muscular dystrophy, Max, starts his sophomore year in high school this week. He will be halfway through his high school education by the end of the school year. For a long time, I was afraid to look too far into his future.

At diagnosis, a specialist told us that Max would stop walking by the time he was 9, need help with all of his daily living activities as a teenager, and die by 20. It was a harsh way to explain Duchenne. However, as I talk with other parents whose sons are around Max’s age, I realize many had similar experiences.

Eventually, we found a medical home at a Certified Duchenne Care Center for my three sons who have the condition. The staff filled us with hope, told us our boys would walk and live much longer, and educated us about clinical trials, cutting-edge equipment, and everything the boys could do. Our philosophy about how to live with Duchenne was based on the foundation of hope we learned there.

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Max’s diagnosis had prepared me for the eventuality that I would bury my son. I hesitated to dream about his future because I was afraid there might not be one.

But now, as a sophomore in high school, Max is still ambulatory, he’s active in theater and music, and he just finished his first summer job. Every time he does something that no one told us he could, I celebrate and wonder what’s next.

I think about Max’s dreams for his future. We need to start planning for college. Until the last year or so, I was afraid that he’d be unable to attend college, but now it’s time for us to get our rears in gear and figure out how he will. I told my husband, Jason, that I need to start signing up for webinars that discuss this. We need to get the boy driving, find him the proper assistive technology, figure out personal care attendants, and more.

Max has a preliminary list of schools he would like to tour. He is thinking about majoring in something related to performing arts, and perhaps eventually teaching in that field. I didn’t think I’d ever get to take my son on a college visit, and now we are within a year of starting that process. He is living a life that doctors didn’t tell us was possible. We love it!

It’s been 10 years since I’ve had a child diagnosed with Duchenne, but I hope the diagnostic conversations go differently nowadays. I hope doctors tell parents and children to dream. I hope they tell them to prepare for a future, including college, jobs, and relationships.

When I tell people our story, it starts with Max. When he was diagnosed, we were only concerned about him, and not his brothers. We had noticed that he wasn’t reaching the same milestones as his older sister. We also saw his brother Chance, who is 17 months younger, start to run and climb before Max.

It was Max we took to our family doctor, then a physical therapist, before finally landing in a neurologist’s office. After an initial evaluation, without results from a genetic test, the doctor diagnosed Duchenne based on an obvious Gower’s sign. The doctor then shared the prognosis.

I started grieving at that moment. I felt like I had walked into that office with a healthy, beautiful 4-year-old son and walked out with a son that was dying. I had never been so distraught in my life.

I hope other parents do not have the same experience if their child is diagnosed with Duchenne muscular dystrophy. Instead, I hope they walk out of the specialist’s office knowing that their child’s life may be different from what they expected, but it can still be meaningful and beautiful.

Before I sign off, I would like to thank the parents and young people before us who made our outlook possible through their advocacy, fundraising, sacrifices, participation in clinical trials, and losses. I will always love and appreciate you.

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