Dylan VanHorn, now 11 months, was born with the extremely rare condition large congenital melanocytic nevus. Only one in 500,
Dylan VanHorn is just an ordinary 11 month old baby that happens to have a highly unordinary condition. Dylan was born with large congenital melanocytic nevus, which essentially means he has large moles or birth marks all over his body. There are even nevi on parts of his brain, which causes him to suffer from seizures. The condition is extremely rare, and since Dylan has the moles over 80 percent of his body, he falls into an even smaller subset. His mothers, Kara Little and Nikki VanHorn, hope that spreading a little awareness about the condition can save Dylan some of the strange looks he tends to draw.
"I just want to start getting the word out that this condition even exists, for when we go out in public and when he starts going to school," Kara says. Dylan's two older brothers, Dominic and Patrick, are five-year old fraternal twins. Kara says she brings Dylan to their school to try to "get everybody used to it," but the reception has not always been warm. Some children have called him names including "monster," and that is the sort of thing she hopes to avoid for his sake.
"People think he either has chicken pox or the mumps or the measles. They always think he's contagious," Kara says.
The truth is Dylan's condition is not dangerous to anyone but himself. The first 11 months of life have involved multiple surgeries and enough pain and irritation that he's struggled to sleep at times. Kara also says he is much more susceptible to infections because the affected areas of his skin are much thinner than normal skin. Since January, she says he has had four MRSA bacterial infections.
There are also the minor annoyances, like a lot of itchiness. Kara says Dylan can play around like any other kid but is often trying to itch the very large nevus that covers much of his back (called a "cape nevus,) making him "look like Baloo" from Disney's Jungle Book.
Along with the minor annoyances come some major concerns. While Kara says there are plenty of adults with the condition, it is very dangerous, particularly for the cancer risk. Dylan's cape nevus in particular is a cancer risk, and it is much more tricky to remove than his smaller nevi simply due to its size.
"Everywhere he has these it's only one layer of skin so if he gets skin cancer it's automatically stage 3, which means it's automatically down inside and in his organs pretty quickly because he doesn't have the protective barriers that skin normally gives you," Kara says. She knows of one
--See NEVUS, page 2
18 month-old who recently passed away from the condition after developing cancer on his spine.
So far Dylan has gone through three surgeries, and Kara says he has at least twenty more in his future. He has six doctors including a hematologist, dermatologist, neurologist, plastic surgeon, an infectious disease doctor and a pediatrician. The surgeries are done in Cincinnati because nobody in the area had the necessary expertise. It's obviously a tiring experience, for his moms especially, but in most respects Dylan has a good life.
"He's over all a happy child, he doesn't know any of this is going on," Kara says.
The plan is to complete most of Dylan's surgeries before the age of five, though many of the moles on his arms and legs will stay. Kara hopes successful surgeries will make it easier on him once its time to go to school.
Kara and Nikki have chronicled Dylan's experience on a Facebook page called "Dylan's Amazing Journey," which is full of photos that showing off Dylan's smile. All things considered, he seems to be having a pretty good time.