06/15/2026 | Press release | Distributed by Public on 06/15/2026 09:51
Charlie loves all things dinosaurs. Be it bones or books, the fifth grader is enamored by the prehistoric creatures that once roamed the earth. It's a subject he's grown to love, even as he's grown up with a rare form of muscular dystrophy that, at first, sent his parents Jacob and Cheryl searching for answers.
Charlie's birth was normal, but his motor skill development was delayed. He had low muscle tone, he developed a flat spot on his head, and he often lost his balance once he began walking. Following several referrals and a whole-genome sequencing test, Charlie was diagnosed with Emery-Dreifuss Muscular Dystrophy.
But through it all, Charlie has met his challenges head on and has kept his sense of humor while doing it. His outlook and determination make him a Hero.
Children's Miracle Network has been there for Charlie's family, providing food vouchers and gift cards while traveling for medical appointments. It also made recommendations for durable medical equipment installed in their home.
Charlie works with a team of specialists at school and through Emplify Health by Gundersen who help him with stretching and exercises to help him maintain his range of motion. He loves reading, learning and classic rock music, and he dreams of becoming a paleontologist, author and podcaster. CMN is by families' sides so that their kids can keep focusing on their dreams.
"It is important that these families can get the support that they need so they can focus on their child and healing," Cheryl says. "Often, these diagnoses come out of nowhere, with no time to plan or think about anything but the health of your child."
Charlie's parents are thankful for the support of Children's Miracle Network, and the world is thankful for our Hero - the next great paleontologist!