Swansea Mother Starts Fundraiser for Son's Experimental Sanfilippo Treatment

Tammy McDaid has opened a fundraising drive for an experimental treatment for her son Tate after he received a diagnosis of Sanfilippo Type A in mid-September 2025. GB News reported that the 34-year-old Swansea mother began the diagnostic process when Tate, then two, was assessed for autism.

Physicians at Birmingham Women's and Children's Hospital noticed a bump on his head during that visit and ordered a CT scan.

The scan raised the possibility of Sanfilippo syndrome, and the family was referred to Noah's Ark Children's Hospital in Cardiff. The process lasted roughly 18 months. Thirteen months after the initial suggestion of the syndrome, doctors told McDaid that Tate did not have the condition.

She remained unconvinced after comparing his features with those of other children she had seen online. In August 2025, specialists met with McDaid and genetic and metabolic consultants. The official diagnosis of Sanfilippo Type A followed in mid-September.

The condition affects approximately one in 70,000 births, or roughly 240 children per year in the United Kingdom. It causes progressive loss of acquired skills such as speech and mobility, along with seizures and movement disorders. Current NHS care is limited to pain management.

A treatment awaiting FDA approval is expected to receive a decision in September 2026. McDaid has begun an official campaign through the registered charity Just4Children to cover costs estimated between £1.5 million and £3 million. The therapy would not reverse existing damage but could stop further brain deterioration.