Tammy McDaid, a 34-year-old hospitality manager from Swansea, Wales, took her two-year-old son Tate to Birmingham Women's and Children's Hospital after noticing he rarely cried as a baby—a subtle sign of what she later learned was Sanfilippo syndrome, a rare neurodegenerative disorder often called childhood Alzheimer's.
Subtle signs of a devastating condition
McDaid initially thought Tate might have autism because he was not very reactive. She told doctors he was 'too good to be true' as he rarely cried and seemed content in his own world. However, a CT scan revealed a bump on his head, leading to the possibility of Sanfilippo syndrome.
Sanfilippo syndrome is a rare metabolic disorder that causes children to lose all skills they have gained, with no cure currently available. Tate is not yet showing cognitive decline, but without treatment, he will deteriorate.
Diagnosis and fundraising for treatment
In August 2025, McDaid was called back for a meeting with a genetic doctor and a metabolic doctor. She said: 'We know the NHS is crumbling so they are not going to have two doctors in a room to tell me good news.' The official diagnosis of Sanfilippo Type A came in mid-September 2025.
McDaid is now raising over £1.5 million to take Tate to the United States for breakthrough gene therapy. She said: 'What hurts me is that I was applying for trials when they first put Sanfilippo on the table, but they closed in August, just before we got the official diagnosis.'
Impact of the disease and hope for treatment
As Sanfilippo progresses, children lose the ability to eat, walk, and communicate. McDaid described it as 'the absolute worst way for someone to die.' However, she is hopeful that a revolutionary drug will be approved by the U.S. Food and Drug Administration in September 2026. If approved, it would be the first treatment for this rare paediatric disease.
McDaid is fundraising through Just4Children, a registered charity. She said: 'I live in a world of hope and denial because I have to live in a world where he gets this treatment.'
