Oct 14, 2024
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.” Layla’s family recently made the difficult decision to bring her home from hospice care and end her treatments. Her mom made a Facebook post asking a close group of friends in her Burn Bootcamp group to come out with their children in costume for some early trick-or-treating, as Halloween is Layla’s favorite holiday. Courtney says, “I thought we'll have 40, 50 kids come through. You know?” But Courtney’s friends kindly reshared the post to their pages – blowing it up on social media. It was shared more than a thousand times, leading to hundreds of people from the Pooler community - coming out to support Layla and her family with some Halloween spirit. “It blew up in less than 24 hours and we got overwhelmed very fast, but in the best way possible,” says Courtney. “I mean, this is an incredible turnout for our girl, and she loves the attention.  She's spunky as all get out with that. And I just…I am so blessed that we are able to be able to give her a Halloween that she's going to remember.” Courtney says the turnout from the people of Pooler restored her faith in the goodness of the community, reassuring her that they have more people than ever on their team. “It's so incredibly hard for us because we so often feel isolated. We know we have our friends and our family and, you know, some big people in the community that have supported us for the last six or seven years. But to actually see it in this kind of a setting is just...It's overwhelming.” Pooler mayor, Karen Williams, attended the trick-or-treat event. She says, “I am just so touched right now. The outpouring of love - I mean, I have people here from Richmond Hill that’s come out for this family in a way I've never seen.” Traffic was backed up to the main parkway with pooler police having to direct traffic. Williams says driving into the crowds of cars and people created an undeniable emotion of pride. “You just can’t make that up. I’ve got chills…I just can't say enough of our community. I mean, we Pooler people are proud. It’s not an exciting event because we know the outcome. But just the love that people are bringing is what so fantastic,” says Williams. “I just want to thank every single person who, whatever city or whatever street you live on, for coming out here and sharing this young lady some love.” The family thanks the community and surrounding areas for coming and giving Layla the best Halloween possible – especially with the uncertainty of the days ahead. Courtney says, “There's so much bad out there. And if we can just say, like, hey, people show up and do good. I had so many people reach out to me that I don't even know that are just offering anything they can do to support us during this time and thank you…Thank you.” The YAYA Foundation is the only foundation for the 4H Leukodystrophy. You can donate here. Donations will help fund research in the future and hopefully be able to find treatments and eventually a cure for this down the road.
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