Challenge aims to raise money for five-year-old Tate McDaid, who has been diagnosed with rare condition known as childhood dementia
A SWANSEA man is taking on a formidable physical challenge this August to raise funds for a local boy with a rare and life-limiting condition.
Jamie Griffiths, owner of Everest Mechanical Services, will attempt to summit Ben Nevis, Scafell Pike, Snowdon, Cader Idris and Pen Y Fan – five of the UK’s highest peaks – within 36 hours in a bid to boost awareness and donations for five-year-old Tate McDaid.
Tate, the son of Swansea mother Tammy McDaid, was first assessed for developmental difficulties at age two after extensive testing identified autism. Tammy has since received the devastating diagnosis that Tate has Sanfilippo Syndrome Type A, a rare genetic condition often described as childhood dementia, which will progressively rob him of the ability to walk, eat and move independently.
Tammy has quit work to spend as much time as possible with her son. Tate has never spoken a word, and his mum says she faces the reality of never hearing his voice.
“I know I’ll never get to hear his voice – that’s a heartbreak I can barely put into words,” she said.
Sanfilippo syndrome is terminal and currently has no widely available cure. However, a gene therapy called UX111 is hoped to be approved in the United States by September 19, 2026, with trial results showing significantly less regression in children who receive the treatment.
Tammy is now in talks with the Cure Sanfilippo Foundation to explore potential trials in America, though treatment costs are expected to start at £1.5 million.
Jamie, who is taking on the challenge with his business partner, hopes the gruelling climb will both raise awareness and bring in much-needed donations to support the family’s efforts.
The main GoFundMe campaign has already raised more than £41,000 from around 1,600 donors, while Jamie’s own fundraising page has reached £260 so far.
Supporters are being urged to donate and share the fundraiser to help give Tate the best chance possible.
