Meet Kid Captain Dylan McGivern
Dylan wasn’t meeting developmental milestones for his age so his local pediatrician referred him to University of Iowa Stead Family Children’s Hospital and the pediatric neuromuscular clinic.
When Dylan McGivern didn’t meet early developmental milestones he was referred to University of Iowa Stead Family Children’s Hospital, where he was diagnosed with Duchenne muscular dystrophy.
“He really wasn't walking until 18 months,” Dylan’s mother, Carly, remembers. “He was struggling with that. So that was a red flag there.”
The family’s local pediatrician referred both Dylan, then 3, and his younger brother, Brady, to UI Stead Family Children's Hospital, where they were given screening tests to check their creatine kinase (CK) levels.
Both had elevated CK levels, and further genetic testing led doctors to diagnose Duchenne muscular dystrophy, a severe form of muscular dystrophy that causes progressive muscle weakness.
“Obviously, you get that phone call, you knew there was a chance you can get (the diagnosis) and you convince yourself that it's not going to happen,” Dylan’s father, Pat, recalls. “It's shocking.”
Carly had particular insight into the condition and its devastating effects:
Her brother and only sibling, Bruce Miller, died at age 18 from Duchenne muscular dystrophy.
While the McGiverns knew what their sons could be facing, they also had confidence in UI Stead Family Children's Hospital and Katherine Mathews, MD, the director of the hospital’s muscular dystrophy clinic, who had treated Carly’s brother and is on Dylan’s care team.
“She’s known nationwide and worldwide for her knowledge and expertise with children with muscular dystrophy,” Carly notes. “We 100 percent trust her and feel confident in what she tells us to do for treatments.”
“With the internet, you can find any information you want,” Pat adds. “And U of I was at the top of the list, across the board, to what we were looking for.”
While there is no cure for muscular dystrophy, Dylan and his brother have been enrolled in clinical trials to try to find treatments to slow progression of the genetic disease. UI Stead Family Children's Hospital was named a certified Duchenne Care Center by Parent Project Muscular Dystrophy, a nonprofit fighting to end Duchenne muscular dystrophy.
“Compared to when my brother was battling it, there's a lot more out there now, in terms of trying to slow the progression of the disease,” Carly says. “We feel that participating in a clinical trial is beneficial to our boys and it helps shape future ways to find a cure for this disease once and for all.”
Dylan was close to his grandfather, Rick Miller, who died last year of cancer at age 68.
“Rick had always wanted to take Dylan to a football game at Kinnick Stadium,” Carly says. “He never got that chance, but we hope to bring Dylan’s great-grandpa, Ken, who is 92, to an Iowa football game this season if we can.”
Now 10, the Dysart fifth-grader is learning to play guitar, participated in Miracle League baseball, and uses a power wheelchair to get to baseball practice.
“This year, due to his decline in mobility and use of manual wheelchair, he is not going to be able to try to get around the bases or play the outfield,” Carly says. “He’s going to help in the dugout as assistant manager to the team. The coaches say, ‘We need 10 Dylans with his leadership and his love of baseball when he cheers on his other teammates.’ He is such an inspiration. We are so blessed that he wants to continue to participate in the sports he loves any way he can.”
His parents appreciate the care their sons receive.