From the moment Alex was born, he’s loved to be the center of attention. However, around 3-years-old, social interactions with peers became challenging and he started falling behind on growth and development milestones. He wasn’t able to jump, ride a bike, run with a full gait, or walk-up stair steps independently. Despite being told that Alex would catch up, his parents insisted on further testing.  

Alex was referred to Nationwide Children’s Hospital where bloodwork revealed indications that he had Duchenne muscular dystrophy (DMD). It was later confirmed through genetic testing. Jerry Mendell, MD, principal investigator in pediatric research at Nationwide Children’s, was conducting a clinical trial aimed at delaying the progression of DMD. Alex and his parents began traveling to Nationwide Children’s weekly for infusions, a therapy they continue today. Results from this trial led to the first-ever FDA-approved therapy for DMD.  

While the therapy has slowed the disease progression for Alex, progression still occurs. “The silly, witty, high-energy boy that we came to love at birth is still there,” says Alex’s mom Dawn.  

Upon learning of their son’s diagnosis, Alex’s parents immediately began advocating, educating, and fundraising. They have raised over $500,000 to support DMD research and donate a portion of funds from their annual golf outing to the Duchenne Care Center at Nationwide Children's.  

“It’s hard to imagine the emotions of losing independence at such a young age while watching all of your peers gain independence,” says Alex’s mom, Dawn. “We are very proud of how Alex tries to not let Duchenne define him.”