Meet the Morgans: A Family’s Journey with Duchenne Muscular Dystrophy

Andy, 8, zooms around the living room couch just ahead of his little sister, Natalie, 5. The whir of his electric wheelchair and the click of the wheels on Natalie’s scooter combine with laughter. Alan and Katie, parents to the siblings, watch their kids make another turn. As Andy races past, Alan asks a question.

“Andy, if you could add one thing to your wheelchair, what would it be?”

“Rockets!” Andy answers without hesitation. 

 Katie describes Andy with a smile: “He is funny, fun-loving, strong, and resilient.” 

All of those characteristics, fostered within a supportive and devoted family, have been vital. Just after Andy’s sixth birthday, he was diagnosed with Duchenne muscular dystrophy. Katie was concerned for years prior to that, but doctors told her not to worry. 

“I spoke to four or five different pediatricians,” Katie explained. “We even saw a physical therapist, a rehab specialist, and (they said), ‘He’ll grow out of it. It’s not a big deal.’” 

 After Natalie was born and began reaching her milestones, Katie became more certain that Andy’s development was delayed.

“I started to just take pictures and videos between Andy and Natalie, just to have reference points,” Katie said. “It wasn't really until I found my own doctor, who is also a mom. She took me seriously (and said), ‘Let's just go forward and -- we'll just do a whole check.’”

 A blood test then led to Andy being diagnosed with Duchenne. 

 “Our hearts kind of stopped,” Katie recalled. “Alan and I had this huge just wrecking ball of emotions.”

 “Duchenne is hard,” Andy shared. “It’s difficult to stand up and get around.” 

 Andy now takes a daily steroid and receives a weekly infusion. He is a third grader at a local elementary school, where he is assisted by a paraeducator. Through it all, the family navigates their challenges with strength and resilience – the core qualities that Katie said she sees in Andy. 

 “In sharing our story, I just really want our friends and family to know that even though Duchenne is such a big part of our lives, we are still just a regular family,” Katie said with a smile. “We still want to be included in birthday parties and playdates and even though they may have to be modified a little bit based on what Andy can do, just don't stop including us. Because we really are just the Morgan family.”