Mum Emma Powell talks about her son who has Pelizaeus Merzbacher disease

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Transcript

00:00It's a rare developmental disease affecting 1 in 50,000 boys.

00:05Thomas, who lives in Raynham, has Plesmere's Bacchus disease, meaning he's non-verbal and has limited mobility.

00:11But when he uses his walker, it gives him his independence.

00:15He loves taking it to the local rec and it also allows him to play with other children at school.

00:20But there's an issue. It's getting too small.

00:23Now his arms are longer and he gets his arms stuck in the spokes of the wheels.

00:27His head rest now isn't in the right position so he'll fall from side to side.

00:32So now when he's walking you have to hold his head in place because he's not getting the full support from the walker.

00:38Although Medway Council paid for his last one, they're refusing to fund any new equipment.

00:44The authority has an issue with where it would be kept.

00:47The school bus that takes Thomas to his specialist school can't accommodate the walker.

00:52His parents suggested dropping it off at school at the start and end of the week.

00:56The family says they were told they wouldn't be trusted to do that.

01:00In not so many ways they didn't believe that's what we would do.

01:03So then they wouldn't fund it again.

01:05So no matter what options we were coming up with, we were told no.

01:09It's frustrating. I understand money is king.

01:12But when it's the joy and he's restricted to a chair, if he doesn't have a walker that fully supports him, he can't walk.

01:20And he absolutely loves it. School use it all the time.

01:23School say how much it makes a difference to his day.

01:26And without that, it's not nice.

01:30At £4,000, the family can't afford a new one.

01:33They've now turned to fundraising instead.

01:35And yeah, within 24 hours we had well over what we had hoped for.

01:40Because we were only looking for half and we'd fund the other half ourselves.

01:43So we don't have to do that now.

01:45So people of Raynham, friends and family have made sure he can have his new walker.

01:50In a statement, the council says they'll continue to work with the family, prescriber and school to ensure the child's needs are met,

01:57including when changes occur, where they are able to.

02:01His parents say they don't understand why the authority has been so difficult about it.

02:06They've now been invited to a meeting with the council to discuss the issue.

02:10Gabriel Morris in Raynham.