13 Jun Let’s help Zak to enjoy his family breaks
Zak Richardson has a life that no 14-year-old should have.
Suffering from the life-limiting disease Duchenne muscular dystrophy, he is now unable to walk or get around without help.
Having to be helped to shower and use the toilet would be every teenage boy’s nightmare but for Zak it is his everyday reality.
The disorder, which is often caused by a genetic mutation, severely weakens the muscles in the legs, arms and pelvis, leaving most unable to walk by the age of 12.
Those who have the devastating disease are also only expected to live until their mid-20s.
Zak, from Newbiggin-by-the-Sea, was diagnosed at 18 months but his mum Victoria’s instinct told her something was wrong with her firstborn long before.
“I trained as a nursery nurse so I could tell he wasn’t meeting his milestones. He couldn’t push himself up, didn’t sit up and didn’t crawl. He was referred for physio at nine months,” The 38-year-old said.
Victoria and husband Gavin’s worlds came crashing down when they were told their son had the disorder and would only live until he was around 18 years old.
“We’d never even heard of it before,” Victoria added. “It was so hard because the pregnancy had been fine and we thought he was a healthy boy.”
Luckily, Victoria and Gavin, 40, have now been told that their son will live longer than expected but life is still difficult for the family – which also includes Sian, 10, and Eva, three.
“Zak was able to walk up until last July when he had a fall and fractured his leg – he hasn’t walked since. We now have to help with everything like dressing him, going to the toilet and showering,” Victoria added.
“It’s been quite difficult for him to lose that independence because before he was able to walk to the toilet and shower himself and then just use his power wheelchair when he went out.
“It was a big shock to him.”
But Zak, who goes to Cleaswell Hill School in Guidepost, Northumberland, is still a positive and happy teen and adores his trips to the family caravan every weekend in Longhorsley.
The precious time means the world to him as it is a haven from his difficult everyday life.
However since Zak has started to need more help with everyday tasks and is growing bigger, it is becoming a struggle for Victoria and Gavin, an IT worker for G4S.
A wheelable travel shower and toilet would make a world of difference for the whole family when they spend their valuable time together at the caravan.
Victoria said: “It would give him some dignity when he needs to use the toilet or shower when we’re there.
“The caravan is also quite narrow and this would fit in the door which his shower chair from home doesn’t.
“We could also wheel him from one end to the other and wouldn’t have to carry him which is getting more difficult as he grows.
“He would be upset if he couldn’t come anymore. He knows everyone here. All the kids love it and he can play outside with his sisters and be an equal.
“When he’s here he doesn’t need someone with him outside all the time.”
But the equipment comes in at a cost of £1,150 and cannot be provided by the NHS or council.
Luckily for Zak, he has been chosen as one of the 10 children to benefit from The Sunshine Fund’s Go Bananas appeal which aims to raise £60,000 this month to buy specialist equipment for local kids who need it.
“It would mean an awful lot,” Victoria, a payment adviser for Disability North, said. “It’s such an expensive piece of kit on top of everything else.
“I only work part-time as I’m a carer for Zak.
“It’s hard getting him around and Gavin works shifts so some weekends he’s not there to help me but the caravan is almost like respite for all of us.”