Overview
- Tammy McDaid is exploring potential clinical trials abroad for her four-year-old son, Tate, after his Sanfilippo syndrome diagnosis.
- She told the BBC the coming year is pivotal for accessing a study as early signs of decline are expected to emerge.
- An MRI in March 2024 showed hollow spaces in Tate’s brain, confirming Sanfilippo after an earlier autism diagnosis at age two.
- Sanfilippo is a rare genetic metabolic disorder that primarily damages the central nervous system; typical life expectancy is around 15 years.
- Children with the condition progressively lose motor and cognitive abilities, and many experience seizures; roughly 3,000–5,000 people in industrialized countries are affected, including about 140 children in the UK.