CHARLOTTE, N.C. (WBTV) - Today, July 17, is Koolen-de Vries Awareness Day. I’d never heard of it either. But when Graham Denley’s mom wrote and said she wanted the world to know about the genetic disorder her 2-year-old son lives with, we figured we would educate ourselves and shout it out to all.
Koolen-de Vries Syndrome is something you’re born with. There are a huge spectrum of characteristics presented with those who live with the disorder.
Graham – who lives in Cabarrus County – got his diagnosis of KdVS (how it’s known in shorthand) just two weeks after birth. The disorder has caused him to experience developmental delays, low muscle tone, and epilepsy… but… Haley says… her son has made incredible progress.
“He has gone from taking just a few steps to trying to run,” she said. “That’s all because of MANY hours of therapy.” Haley says Graham’s speech is also improving, as well as his ability to understand others.
"Graham brings much joy to our lives," Haley said. “He doesn’t know life any differently and is the happiest little boy who likes it when people read to him, and when he can listen to music and play with trucks.”
If you take nothing else out of how to describe KdVS, just know those who live with this disorder typically have a disposition described as cheerful, sociable and cooperative all while living with mild-to-moderate intellectual disability, weak muscle tone, and sometimes with very distinctive facial features.
They’re happy, despite their differences. Thank you, Haley, for the education. #MollysKids
*Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there, which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.