A TRUST is to be set up for a nine-year-old muscular dystrophy sufferer to raise money for care equipment.

Aaron Stephens, from Risca, was diagnosed with Duchenne muscular dystrophy, a debilitating and painful muscle wastage illness, at the age of three.

Aaron’s condition is advancing to such an extent that he is already on steroids much stronger than predicted for his age.

Aaron’s father, Adrian Stephens, 47, and his aunt, Joanne Parsons, 46, have been fundraising for the charity Action Duchenne for many years.

Now, they are in the process of setting up Aaron’s own trust to try and raise money for aids and equipment.

Mr Stephens said: “Action Duchenne is a research charity and we can’t always go through the NHS for things like beds and hoists. That’s why we’ve looked at setting up a trust, as a charity can’t be set up for an individual person.

“It’s a delicate situation as Aaron is just another regular lad. He goes to cubs on Mondays and goes swimming on Wednesdays. He doesn’t complain, he’s a smiley boy. It’s really heart-warming to see.”

A spokesperson for the Action Duchenne charity said the average life expectancy of a Duchenne sufferer is late 20s or early 30s.

Both Mr Stephens and Mrs Parsons have tried various fundraising initiatives for the charity in the past, from car washes to sponsored horse treks, and are planning on running the Brighton Marathon in April.

So far, the Stephens have raised £5,000 in Aaron’s name. The next fundraiser, the Hallowe’en Spooktacular, will be held at the Rivermead Centre, Rogerstone on Friday, October 31.

Food will be provided by Taste of Wales mobile catering and among the activities featured are £2 discos, themed game stalls, face painting, and a bumper raffle.

Mr Stephens added: “The event started off with just a few kids down the community centre and it’s now become something much bigger. We’ve got some fantastic friends and family, and there are some wonderful people in the local social clubs who have helped us.”

For more information on the Spooktacular event, email kat.tonks22@gmail.com