Jaiden was diagnosed with Alagille Syndrome when he was between six and eight weeks old. 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!
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 which have resulted in him spending roughly 13 years on a nasogastric tube which feeds him 12 hours overnight.
When he was just nine-years-old Jaiden 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.
We first went to see Tŷ Hafan when Jaiden was five, 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, Diane, too.
With no Tŷ Hafan life would be a lot worse. Jaiden would not have that extra person and that somebody to talk to. And he loves to make music with Diane. It is his passion. This was especially crucial during the first lockdown, when none of us left the house for the first four months.”
He’d previously enjoyed having Play Therapy sessions with my colleague, Anna, but he’d told her he’d always wanted to write some songs. Then the pandemic kicked off, so we decided to try some virtual music therapy sessions. I met Jaiden via Teams, at first sometimes with his Mum and sometimes with Dad. He’d come to our sessions armed up with all his instruments - keyboard, recorder, ukulele, guitar and a rain stick.
It’s bizarre. There he is at home or school. I’m in my music room, yet we are still able to connect. Jaiden’s got the best sense of humour. He is very, very funny and we spend a lot of time laughing and making jokes.
He’s also very creative and very sensitive. Music is his way of exploring stuff and expressing himself. His music is eloquent and thoughtful. He doesn’t play things conventionally and, recently, has done lot of improvisation, playing jazz on the flute and ukulele, it’s absolutely beautiful. We just play and Jaiden just seems to get lost in it. He comes out with some cracking stuff. We should make a CD.
Music is a really good outlet for him. He’s comfortable and he uses music as a way of exploring and expressing himself. It’s his way of communicating how he’s feeling. Music is a way to say things without talking and his school is very supportive as Jaiden’s teachers can see how much he is into music. Most days now he rocks up to school with his ukulele.
Jaiden wanted to let you know what music therapy means to him and how it has helped him.
We know that the children and families at Tŷ Hafan are close to your heart and we couldn’t continue to do the work we do without amazing supporters like you.
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 all, I love to play music and I have a go at playing the guitar, ukulele, flute and piano.
I enjoy the music therapy I have with Diane from Tŷ Hafan 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.
Playing music like this is fun. And I like it too because I struggle keeping up with things in school sometimes and having music therapy makes me feel a little bit calmer.