Karleigh Stone, 2, just barely learned to sit up by herself with the help of a therapist.
Her next goal is to walk by herself.
"She's got brain and heart and kidney issues," her mother Jessica Stone said. "She's missing the corpus callosum of her brain, she only has one functioning kidney and she did have up to 10 holes in her heart, but they've all resolved."
That is only the beginning of Mowat-Wilson syndrome, a disease so rare Karleigh is the only one in the entire state who has it. Approximately 250 people in the world have the condition.
"We can't even take her outside without her having seizures," Stone said. She said the disease prevents them from traveling or leaving the house with Karleigh.
Her therapist, Bruce Langston, comes to work with her on a weekly basis. He said because the disease is so rare, little is known about it.
There will be a conference on the disease in Kansas City, which is why friends of the family have organized a rally to raise money to attend the conference and to help with medical bills.
Jessica Stone said she still worries about taking Karleigh on the trip because of her seizures.
The rally, called Kickstands for Karleigh, will be held Saturday at Bottoms Up Tavern in Pendleton. Registration begins at 11 a.m. The event will mainly be a poker run for motorcycles and other vehicles, and feature a silent auction and other prizes.
Copyright 2014 FOX Carolina (Meredith Corporation). All rights reserved.
1720 Valley View Drive