A family from Carmarthenshire is getting ready to glow up – literally! – and have some spooktacular fun for Tŷ Hafan Children’s Hospice and is urging others to do the same.
Cameron Fulham is 13 and lives with his mum Aimee and sister, Anwen, seven, in Hendy, near Pontarddulais.
Cameron was born with Joubert Syndrome, a genetic condition so rare that there are only around 600 other people in the world with it. It means that the cerebellum area of his brain is underdeveloped, resulting in Cameron being non-verbal, unable to walk and with some developmental delays.
“We’ve been supported by Tŷ Hafan for four and half years now” says Aimee. “We were struggling during lockdown and I don’t think we would have coped without the support that you give us. Tŷ Hafan is a lifeline to us.”
Now Aimee and Cameron are getting ready to do Tŷ Hafan’s first ever National Botanic Garden of Wales sponsored Dark Run on Saturday 2 November to raise vital funds for the hospice and they are encouraging as many other people from the area to sign up too.
“The Dark Run for Tŷ Hafan at the National Botanic Garden of Wales is a great thing for people to get together and have some fun,” says Aimee.
“But also it raises awareness about what Tŷ Hafan does, and it also raises money for the hospice which is vital.
“Me and Cameron are looking forward to firing the starting pistol on the night itself and then doing as much of the course ourselves as we can. I haven’t got a clue yet as to what we will wear. I’ll probably get a lot of glow sticks and decorate Cameron’s wheelchair with them. I’ll have to have a chat with Cameron about this soon and get on to it!
“It isn’t just Cameron who is supported by Tŷ Hafan. Anwen goes to the Stay and Play Hubs which Tŷ Hafan run locally. She has already built up a really nice bond with the play team at the hospice. It’s so nice for her to be able to switch off a bit – she autistic herself and a young carer for Cameron.
“And I know Tŷ Hafan is always there for me too. If I ever need to talk to them, I can just pick up the phone and someone is there to listen and help in whatever way they can.
“It’s an honour for me, Cameron and Anwen to support this event in any way we can and just to campaign for Tŷ Hafan generally.”
James Davies-Hale, Head of Fundraising at Tŷ Hafan, said: “National Botanic Garden of Wales Dark Run is a brilliant opportunity for family and friends to get dressed up, get together and have a great evening out while raising vital funds for a great cause.
“The Garden will be lit up for this event and fancy dress is optional, but strongly encouraged. Think bright neon colours and Halloween dress up and we’ll be giving a prize for the best costume.
“Run, jog or walk this epic 2.5k spooky fun run which is kindly sponsored by Family Fostering Partners. It’s up to you how you do it. We just ask that each family or group raises a minimum of £50 in sponsorship because everything you raise helps Tŷ Hafan to reach more children and families who need us. You can download your sponsorship form from our website and everyone who takes part will get a free large glowstick and a glow in the dark medal.
“Spaces are filling quickly though, so to make sure you don’t miss out, go to: National Botanic Garden of Wales Dark Run – Ty Hafan sign up now.”
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