“Until autumn 2017, Thomas was a normal eight-year-old boy,” says dad James Meacham, from Blackwood. “He was very fit, he studied karate, he was intelligent, a keen reader of David Walliams and Harry Potter, a total Star Wars geek and very funny. Just a typical kid.

“When he started the new school year that September, my wife Sarah and I started to notice some changes in him, behavioural and physical changes that were completely out of character. Then, in January 2018, Thomas had two big seizures at home. After being blue-lighted to hospital and various tests, we got given the diagnosis of Adrenoleukodstrophy (ALD).

“This is a very rare genetic brain disorder which only affects boys. ALD destroys the protective outer core of the nerves in the brain, meaning all reasoning, motor function and everything your body does is eventually lost. Within six weeks of diagnosis Thomas was blind and he died on 2nd June 2019, just 18 months later.

“When you get a terminal diagnosis for a previously fit and well child, it sounds like a cliché but we literally didn’t know where to turn. Then we were told about Tŷ Hafan children’s hospice. Initially we were scared. We assumed that it would just be where very ill kids go to die. We couldn’t have been more wrong.

“Tŷ Hafan is the most positive, uplifting and inspiring place you’ll ever visit.

“From our first visit when Thomas was able to enjoy the outdoor play area to our last visit when he died, the care, compassion, support we all received from Tŷ Hafan was first class. They even read to him and put Star Wars on in his room after he’d died. I can’t put into words how reassuring that was as a parent.

“We still get calls and visits from our family support worker, and they’ve set up play therapy sessions in school to help our nine-year-old daughter Ella deal with her grief.

“My wife, Sarah, and I still get invites to complimentary therapy sessions at the hospice, and, for me the support of the Dads’ group is unique and invaluable. It can often look like banter but it’s a safe space for Dads who are in the same awful situation to just let loose and vent.

“Whenever Thomas was in Tŷ Hafan we always felt we could properly relax as a family and give Ella some much needed time and attention. I think every Tŷ Hafan parent would say that the hospice has played a massive positive part in their lives.

“I honestly don’t know where we would be without Tŷ Hafan.”