A Newport family 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.
Seven-year-old Patrick Pullen, his mum Collette and dad Matt, who live in Christchurch, Newport, will be starting Tŷ Hafan’s Caldicot Castle and Country Park Dark Run on the evening of Saturday 26th October to raise vital funds for the hospice – and they are encouraging as many other people as possible to sign up too.
Collette said: “Patrick has the rare genetic condition GRIN 2B. It means that he has low muscle tone, has to use a wheelchair, is tube-fed and he has severe learning difficulties and sensory issues. Sometimes his behaviour can be quite challenging – quite regularly Patrick will only have two hours sleep in any given 24 hours. And if I get four to five hours sleep a night with him, that’s a good night.”
Collette, who gave up teaching to look after Patrick full-time, said: “We’ve been getting support from Tŷ Hafan for three years. Everywhere else focusses on the medical treatment of Patrick. Tŷ Hafan is the only place that has ever said ‘Oh gosh, this family is so sleep deprived – we’ve got to do something for them so that they can continue to look after Patrick.’
“The lack of sleep affects so much and Tŷ Hafan is the only place that supports all of us as a family, not just Patrick.
“Every few months we are offered a short notice cancellation bed, in other words, we’ll get a phone call asking us would Patrick like to come in tomorrow to Tŷ Hafan for a couple of days. And for us that is our absolute lifeline because we know Tŷ Hafan is medically brilliant and Patrick is so well looked after. It gives me a chance to spend some time with my other sons, Sam and Vincent. It’s being able to do the simple family things that so many other people take for granted that make all the difference.
“So I would encourage everyone to get involved and do the Caldicot Castle and Country Park Dark Run for Tŷ Hafan, give as much as you can because Tŷ Hafan is quite literally a lifeline for our family and other families like us.”
James Davies-Hale, Head of Fundraising, said: “Caldicot Castle and Country Park Dark Run is a fantastic opportunity for family and friends to get dressed up, get together and have a great evening out while raising vital funds for Tŷ Hafan.
“The castle and parts of the grounds 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 spooky 2k fun run around the castle grounds – 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: Caldicot Castle Dark Run – Tŷ Hafan to sign up now.”