Tammy McDaid's son Tate has Sanfilippo Syndrome, a rare form of childhood dementia that affects just over 100 children across the UK. It's sometimes called childhood Alzheimer's — a condition that gradually steals learned abilities like walking and eating. Tate is five years old, and his mother is watching the clock.
But there's a potential shift coming. A new drug could be approved in the US later this year that might slow Sanfilippo's progression, giving Tate more time to remain active and engaged. It's not a cure. Tammy is clear about that. But it could meaningfully change what the next few years look like.
The Cost of Hope
Tammy has already raised £35,000 to help access the clinical trial, but the real expense lies ahead. If Tate qualifies, they'd need to stay in the US for a year for monitoring and follow-up treatment. That's hundreds of thousands of pounds — not just for the injection itself, but for flights, accommodation, and the time away from home.
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Start Your News DetoxIt's the kind of number that makes a parent's chest tighten. But it's also the kind of number Tammy is willing to chase if it means Tate gets more time.
While waiting for approval, Tammy has made a deliberate choice: to live in the present. She and Tate took a holiday to Fuerteventura just before Christmas, where he spent hours in the pool and at the water park. She's planning a trip to Germany in March to see family. She's trying to take him to as many countries as possible in the next year or two, building a library of moments while he's still learning new skills — like carrying his plate to the kitchen — and still happy.
"I need to live in the moment while he's learning and is still progressing," Tammy said. "He is a happy and healthy little man."
That balance — between hope and presence, between fighting for a future and cherishing what exists now — is what Tammy is living. She's also raising awareness of Sanfilippo Syndrome itself, a condition most people have never heard of. By speaking about Tate's diagnosis, she's helping other families recognize the signs earlier, and helping researchers understand that these rare diseases matter.
If the drug is approved this year, the real work begins — not just for Tate, but for families like his across the UK who've been waiting for a treatment that might actually make a difference.
