Hope Story #43: Colt
In some ways, Colt is just like any other teenage boy. He’s crazy about girls, Auburn University, and anything with wheels.
However, he is not just your average teenager. Since birth, Colt has lived with Cockayne syndrome, a rare autosomal recessive congenital disorder caused by a defect in a DNA repair mechanism. Without this DNA repair process, individuals with CS have restricted growth and development. Many do not live to 12 years old, and even fewer live through their teenage years.
Nineteen-year-old Colt has managed to beat those odds. So in some ways, he’s not just like any other teenage boy. You might even say he’s extraordinary.
“Colt loves to laugh and people watch,” says Karen, his mom. “It’s easier for him to watch what’s going on than it is for him to participate in the action. He wants to do the things that others do.”
Cockayne syndrome has caused him to go deaf and lose his night vision, says Karen, so when he is afraid of the dark, he has his reasons. While he has Cochlear implants which allow him to hear, the deafness has caused him to lose his balance, so he must hold on to the wall or someone’s hand for support. He has a slight tremor that he is able to control unless he is sick, and his back has no S-curve which causes him pain along with arthritis.
Each day, Karen helps him get dressed, assists him in the bathroom, and occasionally has to feed him by hand. She says she can almost hear his heart break when he can’t do what others can, and she hurts with him when his physical pain won’t let him rest.
Karen says one of Colt’s biggest challenges adapting to CS has been his restricted growth. A senior in high school, Colt is 42 inches tall and weighs 37 pounds. He’s a 19-year-old in a 4-year-old’s body, says Karen.
“Since he’s crazy about girls, he wants to drive a car so that he can take one to dinner and a movie,” she says. “He wants to get married and falls in love each year with a college girl who assisted him the previous year.”
Storybook lets him enjoy being one of the guys and riding like everyone else. And of course, he enjoys getting to flirt with the girls, too.
“[He also enjoys] getting to be around animals that he would normally not come in contact with even on the special occasions like Easter when the farm has chicks and ducks,” she says.
Karen says they found out about the farm from a teacher, and she has noticed a change in her son since he started coming here. Colt has gotten stronger, she says, which helps him control his tremors better.
“I love the peacefulness of the nature setting, talking with other moms who share our feelings, and how kind and understanding all the workers and owners are,” she says.
Karen says that while they are a positive family, they are grateful for Storybook Farm for helping make Colt’s life a little brighter.
“Colt's life will be short and the end will be rough,” Karen says, “but because of places like Storybook Farm, we've been able to give our child one more part of life that his condition would have denied him had it not been for Dena's vision and the hearts of the volunteers.”