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 makes him a Hero.
Children’s Miracle Network Hospitals 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 Gundersen who help him with stretching and exercises to help him maintain his range of motions. He loves reading, learning and classic rock music, and he dreams of becoming a paleontologist and author. CMN Hospitals 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 Hospitals, and the world is thankful for our Hero – the next great paleontologist!