Anne-Marie is a Scout Leader and a mum of four sons. Jaiden is her fifth and last child and is ‘her baby.’
“Jaiden diagnosed with Alagille Syndrome when he was between six and eight weeks old,” she says. “We were then told that he had liver disease. One in every 250,000 children have Alagille Syndrome and, after tests, we found out that in Jaiden’s case it’s all down to having a mutant gene.
“Right from the start we realised that Jaiden doesn’t do anything by halves!
“He had his pulmonary arteries widened at eight months. He’s had to undergo a series of operations and he has some more to come yet.
“His first op was when his arteries were really tiny and his blood was not flowing around properly. So they were cut open and patched with a piece of pig artery, with the grafts helping to make Jaiden’s arteries wider. In fact, he has gone into hospital now quite a few times to have them stretched.
“Jaiden’s bones weren’t very strong either. He’s broken each leg once, and one arm twice. We’re just waiting for him to break the other one!!!
“Plus Jaiden’s sight isn’t great and he has growth issues.” Due to his growth issues Jaiden spent roughly 13 years on an NG (nasogastric) tube which fed him 12 hours overnight.
Jaiden was just nine-years-old when he had a liver transplant.
“He received the bottom left lobe of the donor’s liver and someone else received the rest of it. Now he was a ‘J-shaped’ scar on his belly.”
“None of this bothers me, and I quite like my J-shaped scar, he says.
“I go to normal school and I like it, especially history. I love the Medieval Period and I love watching films and TV programmes about this. Most of my friends have known me since I was little, so they have grown up with me having all these stays in hospital and all this stuff done to me.”
Jaiden first became involved with Tŷ Hafan after a local supporter in the Llandrindod Wells area told his family what the charity could offer them.
“We first went to see Tŷ Hafan when Jaiden was five,” says Anne-Marie. “And we were impressed. Jaiden has not needed to stay overnight in the hospice, but he has had counselling through Tŷ Hafan, and, has regular music therapy sessions with their music therapist, Diana, too.”
“I have a go at playing the guitar, ukelele, flute and piano,” says Jaiden, “and I enjoy the music therapy a lot. We get to make up random songs, plus I sing a bit, well sing-ish! So we play the instruments and make up random songs.
“I like it because I struggle keeping up with things in school sometimes and playing music like this is fun and makes me feel a little bit calmer.”
“With no Tŷ Hafan life would be a lot worse,” says Anne-Marie. “Jaiden would not have that extra person and that somebody to talk to. This was especially crucial during the first lockdown, when none of us left the house for the first four months.