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Mum's £3M Plea for Son's Life-Saving Dementia Drug
8 Nov
Summary
- Five-year-old diagnosed with rare childhood dementia needs £3M treatment.
- US-approved gene therapy costs $3.95 million, with access unclear for UK families.
- Tate's mother has raised over £160,000, but it's only 5% of the required amount.
A Swansea family faces a daunting £3 million cost for life-saving treatment for their five-year-old son, Tate McDaid, who suffers from Sanfilippo Syndrome, a rare form of childhood dementia. This devastating condition, sometimes called "childhood Alzheimer's," leads to the gradual loss of cognitive and physical abilities.
In September 2026, the first gene therapy for Sanfilippo Syndrome received approval in the United States. However, the treatment, named FAYUVI, comes with a price tag of $3.95 million (approximately £2.95 million). This presents a significant financial barrier for families outside the US, with no clear funding pathways established.
Tate's mother, Tammy, has been fundraising tirelessly and has accumulated over £160,000. This amount represents only about 5% of the total cost, highlighting the immense financial challenge ahead as Tate turns six this month.
Health officials in Wales are actively engaging with their US counterparts to explore potential access to the treatment for Tate. The pharmaceutical company Ultragenyx acknowledges the urgency but states that international patient costs vary, and recommends families consult healthcare providers for potential access routes.
Sanfilippo Syndrome affects approximately 140 children in the UK. While there is no cure, the gene therapy offers hope to delay the onset of the disease and preserve Tate's mobility and cognitive functions for longer. The urgency is amplified as the condition can progress more rapidly after age five, and Tate is already showing signs of cognitive decline.
