Community rallies around 8-year-old La Grange girl battling rare disease

KY girl battling rare disease that causes dementia gets support from community

La Grange, KY (WAVE) - Hundreds of miles away from home, a Kentucky mother delivered a heartwarming message to her 8-year-old daughter battling a rare disease.

The community is rallying around Justice and her family as the cost of her medical care and transportation rises. (Source: Family photo)
The community is rallying around Justice and her family as the cost of her medical care and transportation rises. (Source: Family photo)

Justice Slayton, who is from La Grange, is currently getting treated at the Children’s Hospital of Philadelphia.

While states away, her community gathered with her in mind Monday.

“She was telling her that everybody as we speak are gathering," Robyn Wickham, Justice's aunt, said.

Wickham said Justice was diagnosed with Alper’s Disease. She said it’s a DNA depletion syndrome that causes dementia, seizures and liver disease.

“It’s rough," Monty Slayton, Justice's father, said. "It’s tough. She’s hanging in there.”

Proceeds from meals bought Monday at Gustavo’s in Crestwood, La Grange and Prospect will help those closest to her pay for travel and medical expenses that have mounted as she fights her disease.

“We know how valuable it is for us to help other families,” Gustavo Reyes, the restaurant’s manager, said.

It's a value from the community Slayton’s family said they feel financially and emotionally, as they support Justice and let people know about the battle she’s fighting.

A new law developing a Rare Disease Advisory Council in Kentucky may help.

A similar bill was vetoed last year, but just signed into law last week.

The council, run by a non-profit organization, would research and track rare diseases, and work to spread awareness about them.

Family members said they would welcome any push to get more information out for Justice, but also anyone who may need the help.

“We just want to bring awareness because the life span for it is 10 to 12 years," Wickham said. "So, it’s rough to wrap our heads around everything that’s already going on, but she is a fighter.”

Family members said they've set up an account for donations under the name Amber Slayton, which can be accessed at any Stock Yards Bank in Kentucky.

They are also selling t-shirts created for Justice to raise money for their expenses through April 1. Click or tap here to buy one.

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