Mum's race against time to find £1.5m to give son, 5, with terminal dementia life-changing treatment

A British mum who was forced to come to terms with her son's terminal illness has been given a glimmer of hope thanks to a life-changing treatment in America.

Thomasina McDaid's son Tate will turn six in November but she has admitted that she cannot think ahead to 2027, due to the nature of his Sanfilippo syndrome Type A, which is more commonly known as 'childhood dementia'.

The severe, progressive genetic disorder affects the central nervous system and can see a child regress and lose their ability to talk, eat and walk, with many tragically not living beyond the age of 15.

However, in Tate's case, it was a chance brain scan which revealed his diagnosis, as he had already been diagnosed with non-verbal autism when he was just two, meaning that it would have been impossible to spot one of the first signs of the disorder.

Dealing with such a devastating diagnosis could easily see some lose hope, but Tammy and Tate, who live together in Swansea, might well be able to plan their future together, should a new groundbreaking treatment be approved across the pond in the US.

Tate and Tammy (GoFundMe)

'It's a big point in history'

There's hope that the gene therapy could be officially rolled out on 19 September, after fantastic trial results which have seen children continue to present as if they don't suffer from Sanfillipo, even at the ages of 11 and 12, when things are expected to have progressed quite significantly.

Speaking to LADbible, she said: “It's going to be the first approved treatment in this in the Sanfillipo world so all the children around the world will eventually benefit from it. It's a big point in history, but it's just one of those things where unfortunately my kid is on the cusp.

"We could get it over here in about two years’ time on the NHS, but the chances are that he would have already deteriorated by that point anyway to the extent where he couldn't get the treatment anymore."

Tate's diagnosis only became apparent after a brain scan (GoFundMe)

Although it cannot be considered a cure yet, and there is also no official fee for the treatment, Tammy has learned from a Sanfilippo charity that the life-changing treatment could cost anywhere between £1.5 million and £3 million.

The former restaurant manager is now fundraising to pay for the treatment, with the intention of flying to America the minute it is officially approved.

She added: "Because it’s such a severe, terminal illness, time isn’t on the kids’ side, so the minute it gets approved, they’re going to have distribution centres ready. On the legal side of things, they can’t call it a cure yet, but the children in the trials are still presenting as if they don’t have Sanfillipo. They’re 11 or 12, they’re still in typical sports clubs, still eating solid foods, and have friendship groups. Their quality of life is amazing. Tate having this treatment, I believe would just stop things in its tracks.

"I was expecting a non-verbal autistic child anyway because he got diagnosed autistic at two. So having a treatment would bring me back to a world where I can go back to work, I can go back to living for the future again."

It is hoped that a new treatment could be approved as early as September (GoFundMe)

'We’re fighting against time'

Although Tate hasn't yet lost his ability to walk, there are real concerns that he may soon be fed through a tube, as it is likely that he will soon lose his ability to swallow.

Since he has the energy of a 'Duracell bunny' and struggles with eating, Tammy is understandably desperate to get him on the plane as soon as things are approved, especially since it might be too late by the time the treatment potentially arrives on the NHS.

She added: "We’re fighting against time because I can’t say for sure that in six months’ time he’s going to lose this or that. The deterioration can happen extremely quickly, but that’s not always the case. That’s the ugly part about this disease, we cannot properly prepare because we just don’t know when things will come."

While it can be tricky to detect the disorder, especially in non-verbal children, Tammy and other parents living with Sanfillipo have all noticed the potential sign, which is their child's facial features.

Children with 'cute button noses' and particularly coarse eyebrows might well be suffering from the rare genetic disorder without showing any other signs, so it might be worth getting them checked out.

Tammy's fundraiser, which you can donate to here, has already raised over £60,000 with fellow Welsh celebrities such as Rob Brydon and Michael Sheen showing their support.