Local boy battling rare, incurable disease that's impacted less than 20 people

A Bucks County boy is one of less than twenty people in the world battling a rare and incurable disease that has stolen his hearing and greatly impacted his ability to walk.

Cole Canning, a 6-year-old from Bristol, was diagnosed in 2021 with Mitchell Syndrome, a genetic mutation that attacks the nerves in a patients body. 

"It could be the nerves in your eyes, you could have vision problems, mobility issues," Cole's Dad Matthew said. "You don't know when it's coming or when it's going away or staying forever."

Cole's diagnosis began when his Pre-K teacher thought he might suffer hearing loss. Tests later confirmed that he was losing his hearing, and the family tried everything from hearing aids to cochlear implants.


Genetic testing later right before Cole's fifth birthday revealed that he had Mitchell Syndrome, for which there is no cure and no treatments. The family learned sign language, but Cole's battle worsened when his father said the disease hit the nerves in his spine, impacting his ability to walk.

"It hit the nerves in his spine, so he was having trouble walking and most recently he was in the hospital for four months with COVID and pneumonia, and he's having respiratory issues," Matthew said. 

What the family wants most is to get the word out about Mitchell Syndrome by raising money for the Mitchell and Friends Foundation. The organization was started by the family of Mitchell Herndon, the first person known to have the disease. 

"Anybody who wants to help, we would be grateful for it so they can grow up and lead their lives to the fullest, every kid that's diagnosed with it," Cole's Mother, Nacole said. 

She started an Instagram and Facebook page named "WeSignWithCole" to increase awareness. The family remains hopeful that awareness campaigns will increase research to find a cure.