When Heather Wiseman’s youngest son, Camden, started falling more often than other toddlers, she tried to convince herself it was normal. Maybe he was just clumsy, she thought. Maybe he’d grow out of it. But when the falls continued — and he began avoiding being held — her mother’s intuition told her something was wrong.
“We thought it might be autism,” Heather said. “He wasn’t social, he didn’t want people to hold him — and he was constantly falling. As a mom, you just know when something isn’t right.”
Their pediatrician wasn’t convinced there was cause for concern, but Heather and her husband, Aaron, pressed forward. When insurance denied coverage for neurobehavioral testing, they paid $3,000 out of pocket and spent a long week at a testing center as specialists observed Camden from morning to night.
The evaluation led to a referral for genetic testing at Akron Children’s Hospital. After a seven-month wait, the results arrived — and changed everything.
Camden was diagnosed with a rare subtype of Charcot-Marie-Tooth (CMT) disease, a hereditary neurological disorder that affects the peripheral nerves and causes progressive muscle weakness and pain.
More tests followed. Their middle child, Connor, was also diagnosed with CMT. Their oldest, Addie, was identified as a carrier of the gene, meaning she doesn’t have symptoms but could pass it on to future children. Aaron was later diagnosed with a different subtype of the disease, CMT Type 4.
Heather remembers the day the results came in vividly. “We sat in the car and just cried,” she said. “You don’t ever expect to hear that both of your sons have a rare disease — and that your daughter carries the gene, too.”
A Family Adapts
For the Wisemans, the diagnosis reshaped daily life. CMT causes nerve damage that can lead to difficulty walking, pain, and muscle loss in the hands and feet. Camden, now 6, wears shoe inserts and uses heat pads to manage pain, though he resists wearing braces.
“Some days he plays soccer and runs around like every other kid,” Heather said. “Other days, it hurts just to walk across the room.”
Connor, who has milder symptoms, understands that he shares the same condition as his brother. Addie has taken on a supportive role, learning alongside her brothers about what it means to live with — or carry — CMT.
“Our goal is to let them all live their best lives,” Heather said. “We don’t want this disease to define them.”
Turning Pain Into Purpose
Instead of letting the diagnosis break them, the Wisemans decided to take action.
After connecting online with a parent in Denver raising funds for CMT research, Heather and Aaron were inspired to do the same in Ohio. They established a nonprofit organization to raise awareness and money for a potential cure — and to support local families facing similar challenges.
Their biggest effort yet will take place Nov. 15 at The Onesto Event Center in downtown Canton. The “Night of Giving” fundraiser will feature a silent auction, drinks, and hors d’oeuvres, with proceeds going toward a $6 million goal for FDA testing of a potential treatment for Charcot-Marie-Tooth disease.
“This isn’t just for our kids,” Heather said. “It’s for every family living with this diagnosis. We want to help others who are walking this same road.”
Beyond research, the nonprofit also provides financial assistance and scholarships for families dealing with medical expenses, therapies, and adaptive equipment.
Finding Strength in Community
Despite the emotional weight of their journey, Heather said her family’s strength comes from the community around them — neighbors, friends, and strangers who have offered support, prayers, and donations.
The Wisemans stay involved in their children’s schools, coach youth sports, and continue to find joy in small, everyday moments. Heather said the experience has taught her to value every day — good or bad — and to meet challenges with hope.
“I used to cry every day out of fear,” she said. “Now, I cry out of pride. My kids are so strong. They keep going no matter what.”
How to Help
A Night of Giving: Silent Auction Fundraiser
📅 Friday, Nov. 15 | 6:30–9:00 p.m.
📍 The Onesto Event Center, 225 2nd St. NW, Canton, OH 44702
🎟️ $100 per person | $175 per couple – CLICK HERE TO BUY TICKETS
🥂 Drinks and heavy hors d’oeuvres served.
👗 Semi-formal attire.
Tickets and donation links are available via QR codes on the event flyer or through the Wiseman family’s nonprofit organization.
