Propelling Progress for Duchenne patients
It’s been nearly 15 years since Liam Ealy was diagnosed with Duchenne muscular dystrophy, a genetic disorder that causes deterioration of vital heart, lung and skeletal muscles. Worldwide, about 20,000 children are diagnosed with Duchenne muscular dystrophy each year. Due to the Duchenne gene being found on the X-chromosome, the disorder primarily affects males.
Despite the challenges of the debilitating disease, Liam’s come a long way. He’s active in a wheelchair soccer league and after high school, he’s planning to study cinematography at Ball State University.
Liam’s mom, Aimee, smiles when she listens to her 17-year-old son talk about his love of action-adventure movies, history and video games. Things were much different in the early days of Liam’s diagnosis when Aimee says the family was overcome with emotion, confusion and in need of support. As the Ealys soon discovered, Duchenne—a rare but extraordinarily complex medical condition—requires oversight and management from specialists in as many as 10 fields.
“Even with my medical background, it’s a lot to handle,” says Aimee, who has worked as a respiratory therapist at Riley Children’s Health for the past 22 years. “That’s why the multidisciplinary clinic at Riley that provides coordinated care for Duchenne patients is so important.”
Strengthening support for families impacted by Duchenne is one of the goals of a recent $5 million gift to Riley Children’s Foundation that aims to propel the Riley Children’s Duchenne muscular dystrophy program into one of the best in the country.
The primary and immediate focus of the $5 million gift is to dramatically enhance vital care coordination and ease the unique stresses that families like the Ealys encounter when seeking care for Duchenne. The donation is from three siblings and their spouses whose family has been affected by the disorder: John Ackerman and his wife, Kathy; Barbara Nicholoff and her husband, Brian; and Leslie Ackerman
For Liam, who dreams of becoming a filmmaker, and other Duchenne patients and their families, this generous gift offers hope. Through personalized care and new treatments that arise from groundbreaking research, Riley is leading the way to a future in which children born with Duchenne go on to live long, full lives.