By University of Iowa Stead Family Children’s Hospital
IOWA CITY, Iowa — Logan Manderfield loves sports. He enjoys swimming and manages his school’s football, basketball, wrestling, and baseball teams. But it’s his determination and positive attitude that have inspired those around him.
When Logan was around 1 year old, his parents, Lyndsey and Don, noticed their son wasn’t meeting his developmental milestones.
“He wasn’t trying to pull himself up. He wasn’t crawling or attempting to walk,” remembers Lyndsey. “We saw a pediatrician in Iowa City, who said, ‘It’s not necessarily anything to worry about. If he’s not walking in three months, bring him back.'”
Almost five months later, however, Logan still wasn’t walking. He was referred to University of Iowa Stead Family Children’s Hospital for a blood test. The next day, the Manderfields received a call with the results.
“I’ll never forget that day,” says Lyndsey. “The poor resident on the phone wasn’t wanting to tell me the diagnosis, but I begged him, ‘Please, just tell us what’s wrong.’ He used the term ‘Duchenne muscular dystrophy.’ That was the first time I’d ever heard those words.”
Duchenne muscular dystrophy (DMD) is a rapidly progressive genetic disorder that causes muscles to degenerate and become weak. It typically occurs in males and can ultimately affect heart and lung health as well.
The news was shocking to Logan’s parents.
“It turned our world upside down,” says Don.
“I felt devastated. I looked at this little boy sitting in a stroller next to me, and he looks fine, but the damage was happening on the inside and we didn’t know it,” adds Lyndsey. “Eventually, you accept that he has this diagnosis, but by no means does that mean you’re not going to fight.”
The Manderfields met with pediatric neurologist Katherine Mathews, MD, who specializes in treating children with muscular dystrophy.
“I literally trust Dr. Mathews with my son’s life,” says Lyndsey. “Dr. Mathews is known not just nationwide but also worldwide for her work with neuromuscular diseases.”
“Without a doubt, we are at the best place we could possibly be,” adds Don.
UI Stead Family Children’s Hospital is a Certified Duchenne Care Center, dedicated to improving care for those living with Duchenne. There is currently no cure, so Logan participates in a clinical trial to help others with Duchenne. He and his family make the two-hour drive to Iowa City once a month for tests, assessments, and an IV infusion.
“By participating in a clinical trial, we may be part of finding a viable treatment for this terminal disease,” says Lyndsey. “This is the first time I can say I feel hopeful that there could be a potential treatment for Logan.”
The older Logan gets, the more his muscles will weaken. Today, he has regular visits with his care team, takes heart and corticosteroid medications, and undergoes monthly physical therapy. He has some difficulty walking and standing, and he uses a wheelchair for longer distances.
Through it all, Logan has impressed his family with how he has approached his challenges.
“Logan rarely every complains about having muscular dystrophy. I look up to him in that way…how he’s handled the whole situation,” says Don. “He’s actually my hero.”