WKYT | Lexington, Kentucky | News

Fundraiser scheduled for child with rare disease

LEXINGTON, Ky. (WKYT) - A Lexington couple who have a child with a rare genetic disease are asking for your help.

Sergeant Jacob Crawford, who works at the Fayette County Jail, and his wife are raising a daughter with Batten Disease. It's a rare genetic disease with no treatment and no cure.

"It's a genetic disorder. It's very rare," explains mom Jaime Crawford.

So rare, that baby Sophia is one of 132 children in the US with the disorder. Batten Disease carries with it a life expectancy anywhere between two and four years.

"Her brain is constantly in a seizure. She also is blind, and she has hypotonia which is severe muscle weakness, so she can't hold her head up, she can't sit up, she can't hold a toy or anything like that," Crawford says.

Caring for Sophia, for the Crawfords, is like caring for a newborn. Jaime Crawford and her husband, a sergeant at the Fayette County Jail, must make frequent trips to see Sophia's doctors in Cincinnati.

"We've spent more time in the hospital than at home with Sophia. I'd say about one time every month we're having a hospital stay."

Strangers that heard about Sophia's story decided to help. The couple, now friends of the Crawfords, are hosting a family-friendly event Saturday at Talon Winery to raise funds to pay for Sophia's medical expenses. The event is from 2 p.m. to 6 p.m. Tickets are $15 for adults.

"I resigned from my job that I had for nine years this past February to stay home and take care of her full time. It kind of cut our income in half. And it costs a lot to take care of a special needs baby especially one that has a terminal illness."

Crawford says the amount of support her family and the community have given them through the last year and half has been overwhelming.

To purchase tickets for the event, or to learn more about Batten Disease, you can search "Sophia's Journey" on facebook, or visit fundraiserforsophia.org.


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