I wheely need my chair!

Big Jack Ives in his wheelchair.
Big Jack Ives in his wheelchair.

THE mother of Big Jack Ives has threatened to take him out of his school – after claiming staff had questioned his need for a wheelchair!

The five-year-old – with a rare condition which has made him grow to twice normal size – has made national headlines, after the South Yorkshire Times highlighted his plight.

Now his mum Hayley says she had to threaten to remove him from Swinton Queen Primary School, after a row.

Angry Hayley told the Times: “When the school called me, to ask if I had a letter saying Jack really needed to use a wheelchair, I couldn’t believe it”.

The mum also said she feared her son has been taking part in activities at the school that could further damage his health.

She said: “He hasn’t been risk-assessed. But the school had been sent a letter saying he was not allowed to walk more than 50m”.

But she claimed her son had been allowed to do PE, which she said could further damage his back.

She told the Times: “We felt it was a danger to his health, so we decided to take drastic measures”.

But she revealed that Jack is now back in class – after headteacher Sharon Joyce stepped in, to resolve the situation.

She said: “The headteacher has been absolutely fantastic. We have come to an agreement now, and we will just see how it goes.

“She said if we have any problems, we just have to go and see her.

“She is now fully aware of the many additional needs Jack has.

“He is to use the lift into school and the chair is now to go in with him – though he gets himself in and out of the wheelchair to take him from the class to the dining room.”

Hayley said she is now applying for a Statement of Special Educational Needs, which she hopes will clarify Jack’s situation in the future.

The school was on holiday this week and no-one was available for comment.

Young Jack suffers from Beckwith Wiedemann Syndrome – a rare disease which affects only 64 people in the UK, and makes him grow at a faster rate than normal.

Standing at 4ft 2ins tall, he is already the size of an average 10-year-old, and his parents said he could grow to more than 7ft tall.

He was born with one leg shorter than the other, which means he has to use the wheelchair.

He has already undergone 15 operations in his short life, including three surgeries to reduce the size of his tongue.

He has had a tracheostomy – tubing in his neck to help him breathe – and is also at risk of tumours.

Meanwhile, a fundraising campaign to fly Jack to America for life-changing treatment has been boosted by a sponsored walk that raised hundreds of pounds.

Mum Hayley and dad Darren organised a sponsored walk which has raised up to £800 to fly Jack to see US specialists who may be able to offer advanced treatments.

A group of about 15 walkers set off from The Gate Inn in Swinton at noon and ended up at the Pastures Lodge in Mexborough for an evening of live music.

The event raised about £600 on the day and a further £200 is expected to be gathered in additional sponsorship.

The family have now raised a total of £1,400 and are well on their way to raising a target of £2,500.

Hayley said: “We are so grateful to everyone who came down and supported us. To raise that amount on one day is brilliant.

“We have been amazed by the response from people.

“The sponsored walk was a chance for people to have fun and also to come and meet Jack in person.”

She added: “If we can get him over to America that would potentially change his life.

“The doctors over there will be able to give us advice on how he should be treated over the coming years.

“The specialists in America are world leaders in the field and the information they will be able to give us will be invaluable.

“We just want to give Jack the opportunity to do things that other kids his age can do.”

His parents want to travel with him to Denver, Colorado, in July to attend the bi-annual Beckwith Wiedemann Conference.

They launched their fundraising campaign through the South Yorkshire Times, and you can support the family by emailing them at hayley.ives@talktalk.net