Charli’s father says she is the only kid in Texas with this particular variant: CLN6 Batten disease.
SAN ANTONIO — Charli is fighting an extremely rare and terminal condition often referred to as childhood dementia at just five years old.
Charli qualifies for a gene therapy trial in California through the Charlotte and Gwenyth Gray Foundation but the family needs to raise $850,000 between now and the end of the year to continue with her start date of April 2026.
Back in May we spoke with Charli’s mom, Stevi Ashcraft who said 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.”
KENS 5 spoke with Charli’s father, Aaron Juvera who says Charli is the only kid in Texas with this particular variant: CLN6 Batten disease.
“For Charli, we want to see her participate so that she can have a long life,” Juvera said. “So that she doesn’t have any more deterioration from it. Doesn’t lose skills like so that she can keep walking, keep talking and everything. “
The family is hoping through the community’s support, Batten disease can be eliminated.
“Then in the grand scale, like to help all these kids that are underrepresented, and hopefully come to a point where we can exponentially slow or even stop this disease,” he said.
“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, click here to donate.
To support the family, click here for their Facebook.
To follow Charli’s journey, follow her on Instagram here: @hopeforcharlipearl