Wheelchair-bound student made 'prisoner in his own bedroom'

Jake Cullen, 15, who has the rare Duchenne Muscular Dystrophy condition, has been fed-up and miserable at not being able to get downstairs while his parents, Mark and Tash, have been exasperated at not being able to get the lift fixed.

“It’s been a nightmare,” said Tash at their home in South Petherton. “The lift went wrong on Friday (January 15, 2016) evening and it’s meant that Jake has had to stay up in his bedroom all over the weekend.”

Although Jake was downstairs when the problem first happened – his bedroom and bathroom, which has been adapted for wheelchair-users – is upstairs.

It meant that Jake would have to stay downstairs in his large electric wheelchair 24/7 and hope that he did not need the toilet until the lift was fixed.

But there was no way that Jake could stay downstairs and so his dad and a family friend had to finally carry him up the stairs to his bedroom in a bath chair – putting themselves at risk of injury – and the Wadham School student has been there ever since.

Tash said: “It’s not a case of Jake just being able to go and sleep on the settee or anything like that. He needs his own bed, which is a special hospital one, with a proper medical mattress and although we have a downstairs bathroom, it is not really suitable for Jake.”

As soon as the lift broke Tash was on the phone to the Stonewater housing association – of which they are residents – to ask for an engineer to come out and fix the problem as it was a matter of urgency.

“I couldn’t believe it when they said they couldn’t send anyone out until Monday,” she claimed. “I explained the situation fully and yet they couldn’t grasp how important it was for us to have the lift fixed for Jake.”

Mark, who works at Pittards in Yeovil, said: “I phoned Stonewater again on Saturday morning and said I’d be going to the press and the MP about the problem and, funnily enough, they said they’d get an engineer to us later that day.

“But unfortunately when the engineer arrived – I think he’d driven all the way down from Coventry – the poor bloke was really apologetic and said that he couldn’t fix it.

“When I spoke to them on Saturday they were very sympathetic – but I don’t want their sympathy; I just want the lift fixed so Jake can get back to normal.”

There was more disappointment for the family on Monday when another engineer arrived at their home – but was unable to fix the lift.

So it was fingers-crossed for yesterday (Tuesday, January 19, 2016) that the lift would be fixed at the third time of asking.

Stonewater’s assistant director for assets, Richard Payze, said: “We are genuinely sorry that we have not yet been able to repair the lift for Jake Cullen and Mr and Mrs Cullen.

“Our engineers made every effort to repair the lift during both of their visits on Saturday and Monday - they have identified faulty batteries and will be returning on Tuesday (January 19) to replace them.

“We are in regular contact with Mr & Mrs Cullen and our focus now is on sorting things out quickly and that we make sure that this never happens again.

“We will be carrying out a full investigation into our processes so we can learn from what went wrong.

“As a leading social landlord, we have a responsibility to make sure we put customers at the centre of things, and can only apologise for any unnecessary upset caused by our delay in resolving this issue.”

Tash added: “Jake is fine – although cheesed-off. But he’s safe and fed and warm, but he is stuck upstairs. Some teenagers might like the idea of spending all weekend in bed, but Jake feels like a prisoner in his own bedroom.”

Jake said that it had been very boring stuck in bed over the weekend and was looking forward to when the lift was finally fixed.

Jake’s brother Brad, who also had Duchennes, died three years ago aged 15 from heart failure brought on by the muscular dystrophy. Brad would have been celebrating his 18th birthday today (Wednesday, January 20, 2016).