There's finally a treatment for my five-year-old's dementia - but it'll cost me £3m
Summary
Tate McDaid, a five-year-old boy from Swansea with Sanfilippo Syndrome Type A, may be eligible for a gene therapy approved in the United States, but the reported price is about £2.95 million for a one-time treatment. His mother, Tammy, has raised more than £160,000, while Welsh health officials are discussing possible routes to access the treatment; it is not currently available in the UK.Key Facts
- Tate was diagnosed with Sanfilippo Syndrome when he was four.
- Sanfilippo Syndrome Type A is a rare, progressive condition that can cause children to lose abilities such as walking and eating.
- The drug, called FAYUVI, was approved in the United States in September 2026 as a treatment for children with the condition.
- The reported US price is $3.95 million, or about £2.95 million, per child for the one-time treatment.
- The drug may delay the condition's progression, but the article says it is not yet available in the UK.
- Welsh health officials are speaking with US officials about possible ways for Tate to access the treatment.
- Tammy McDaid has raised more than £160,000 toward the estimated cost.
- The Society for Mucopolysaccharide Diseases estimates that about 140 children in the UK have Sanfilippo Syndrome.
Read the Full Article
This is a fact-based summary from The Actual News. Click below to read the complete story directly from the original source.
