A Swansea mum has raised £125,000 in less than a year towards a £1.5 million target to get life-changing treatment for her five-year-old son, who has a rare genetic condition often called childhood dementia. The treatment could be approved by the US Food and Drug Administration (FDA) this month, making the public's help more crucial than ever.
Tate, from Swansea, was diagnosed with Sanfilippo Syndrome Type A in September last year, when he was four. The condition is rare, genetic and terminal. His mum, Tammy McDaid, is trying to raise £1.5 million to take him to America for breakthrough gene therapy that would stop the condition progressing.
FDA approval expected this month
The therapy, called UX111, is expected to be approved by the FDA on September 19, roughly a year after Tate's diagnosis. Ms McDaid believes it will save her son's life. She said all the medical professionals and organisations involved are "extremely confident" and are preparing for the treatment as though approval will be granted.
"For almost a year, I have been fighting to raise the £1.5 million or more that may be needed to access this treatment. We have around £125,000 currently raised. If approval is granted, the treatment that could save my child will finally exist, but money and exposure will still stand between Tate and receiving it," she said.
Eight percent of the target raised
Ms McDaid, a solo mum, said "everyone is moving in preparation" for the therapy to be approved, both parents and professionals. She described the £125,000 raised so far as "absolutely insane" given that it has mostly come from fundraising events in Swansea, but noted it is still only around eight percent of what is needed.
"It is going to be the first ever life-saving treatment approved for Sanfilippo in the world, which is huge. It is about to become a different world than for every other Sanfilippo parent before me," she said. "It has taken me the best part of a year to raise what we have already. But if I keep going at that rate, we're not going to get it in time."
Tate's progress and celebrity support
Ms McDaid said Tate is showing no signs of regression. He remains very active, has just been placed in a specialist school where he will receive hydrotherapy three days a week, and will soon have an AAC device to help him communicate, as he is non-verbal. In recent weeks, he has started babbling for the first time.
"The last couple of months, seeing him almost trying to tell me something, with this treatment, maybe I could hear him say 'mum', or him asking me something. So much could come from this treatment, and it really is night and day, because if he doesn't have it, chances are we could see him regress," she said.
Tate's story has been shared by celebrities including singer Joss Stone, who is following his journey and sharing videos on Instagram, and Miss Rachel. Rob Brydon and his daughter Amy have also offered support.
Charity football day planned
On Sunday, September 27, a charity football day called Kicking It for Tate will be held at Pontardawe Football Club, featuring well-known faces from football, rugby, television and social media, including Lee Trundle, Josh Navidi, Finley from Love Island and social media influencers such as the Welsh Erection Boys. Tickets can be purchased online, and donations can be made via the JustGiving fundraiser.
