San Antonio Girl Battles Rare Disease: Community Rallies for Charli's Gene Therapy Trial

May 19, 2025
San Antonio Girl Battles Rare Disease: Community Rallies for Charli's Gene Therapy Trial
  • Charli Ashcraft, a 4-year-old girl from San Antonio, is battling CLN6 Batten Disease, a rare and terminal condition often referred to as childhood dementia.

  • Initially misdiagnosed with autism, Charli's condition was identified early, which is crucial for seeking effective treatment.

  • She is currently the only child in San Antonio diagnosed with this disease and has been accepted into a gene therapy trial in California scheduled for later in 2025.

  • Charli's mother, Stevi Ashcraft, emphasizes the importance of community support in their fight for a cure, noting that the disease leads to the loss of developmental milestones and cognitive impairment.

  • Leah Garza, Charli's Pre-K teacher, has expressed her commitment to supporting Charli and is informing her classmates about the importance of helping her.

  • To raise funds for Charli's treatment and to raise awareness for Batten Disease, a fundraising event is planned that will include t-shirt sales and food plate sales.

  • This fundraising event is scheduled for May 24, 2025, at Raymond Russell Park, with all proceeds directed to a relevant foundation to support Charli's treatment.

Summary based on 1 source


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