Charli’s mom Stevi Ashcraft says her daughter is the only child in San Antonio with CLN6 Batten Disease.
SAN ANTONIO — Charli is fighting an extremely rare and terminal condition often referred to as childhood dementia at just 4-years-old.
Charli qualifies for a gene therapy trial in California later this year but she needs the community’s support for a fundraiser happening May 24 at Raymond Russell Park.
Charli’s mom, Stevi Ashcraft says her daughter is the only child in San Antonio with CLN6 Batten Disease.
“You wouldn’t be able to tell that she has anything, except for maybe like a speech impediment, which plenty of kids have,” Ashcraft said. “One of the reasons why we’re fighting so hard is that we want a cure is out there.”
She says with this disease, there is a loss of developmental milestones and cognitive impairment.
“A lot of times, kids are misdiagnosed with autism,” Ashcraft said. “She did initially get diagnosed with autism but as time went on there was more going on. She actually caught her diagnosis fairly early. Some kids it’s not caught until they stop walking or they completely stop talking.”
Leah Garza is Charli’s teacher at Pre-K 4 SA.
“I want to wake up every day knowing that we’re fighting for Charli and that we’re going to give her an opportunity that she deserves,” Garza said. “You know we’ve talked to the kids about what Charli is going through. They will do anything for Charli. They will make sure she has her snack. They’ll put her backpack away for her. They make sure she is set.”
A gene therapy trial in California at the end of the year has the potential to greatly impact Charli’s quality of life.
“My hope for her is that we cure Batten’s Disease in a way that will be meaningful in her lifetime and the lifetime of other children,” Ashcraft said.
The gene therapy trial is being funded by the Charlotte & Gwenyth Gray Foundation to cure Batten Disease.
On May 24, Charli’s family and friends are organizing a fundraising event with all proceeds going directly to the foundation where you can purchase t-shirts and support the family through plate sales.
To learn more about Charli’s journey, click here.
To learn more about the fundraiser, click here.