A Newport family is getting ready to have some spooktacular fun in aid of charity this month and is urging others to do the same.    

Seven-year-old Patrick Pullen, his mum Collette and dad Matt, who live in Christchurch, will be starting the 2k Ty Hafan Caldicot Castle and Country Park Dark Run on October 26.

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.

Patrick Pullen in his little devil fancy dress costume (Image: Submitted) "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 Ty Hafan for three years.

Patrick Pullen in his specially adapted walker (Image: Submitted) "Everywhere else focusses on the medical treatment of Patrick. Ty 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.'   

“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 for a couple of days.

Patrick Pullen at home (Image: Submitted) "For us that is our absolute lifeline because we know Ty  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.  

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 funds for Ty Hafan.   

Patrick Pullen relaxing at Ty Hafan Children's Hospice (Image: Submitted) “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."

For more details go to the Ty Hafan website.