POOLER, Ga. (WSAV) – The community of Pooler comes together in a big way to make a early Halloween special for one little girl.
Layla is a six-year-old girl from Pooler suffering from 4H Leukodystrophy, a rare terminal disorder that her sister also suffered from before sadly passing last year. The genetic condition affects the white matter in the brain, eventually causing it to disappear over time. That causes the central nervous system to shut down, which in turn shuts down major body organs throughout the entire body. Layla’s mother, Courtney Alacan, says because it’s so rare, many people aren’t aware of what it is.
“We’ve always thought spreading awareness is important, but especially right now, because driving for research and potential treatments down the road is just something that we really hope to see,” says Courtney. “Unfortunately, it won’t happen in Layla’s lifetime. It didn’t happen in her sister’s lifetime. But if my girls can do anything to help find a treatment in the future, that’s just all that we can hope for.”