Summary
A mother in South Wales discovered her son, believed to have autism, actually has Sanfilippo Syndrome Type A, a rare condition known as childhood dementia. Doctors confirmed the diagnosis after finding signs in his brain during a CT scan. The family is now focused on finding treatments to improve his quality of life, despite there currently being no cure.
Key Facts
- Tammy, a mother in Swansea, South Wales, recently learned her son Tate has childhood dementia, not autism.
- Doctors diagnosed Tate with Sanfilippo Syndrome Type A in March 2024.
- Sanfilippo Syndrome causes a gradual loss of skills like walking and eating.
- Many children with this syndrome are misdiagnosed with autism early on due to similar symptoms.
- There is no cure for Sanfilippo Syndrome, but research and experimental treatments are ongoing.
- A gene therapy called UX111, which could slow disease progression, may be approved in the U.S. by 2026.
- Tammy has started a GoFundMe page to raise money for possible treatments in America.
- She shares her son’s journey on TikTok and is preparing to become his full-time carer.
