SUPERSIZED tot Jack Ives’ hopes of flying to America for potentially life-changing treatment were grounded this week by a new illness which has prevented him from travelling.
The five-year-old Swinton lad should have been flying Stateside with his mum on Tuesday to see doctors about the syndrome that makes him grow at TWICE the rate of a normal boy.
Well-wishers had donated hundreds of pounds to help fund the trip after the Times highlighted the plight of the tot.
But doctors at Sheffield Children’s Hospital gave the family the devastating news that little Jack cannot fly due to a new problem with his liver.
Poor Jack now faces a two year wait before he can next fly to the US to see specialists.
His mum Hayley said: “He had an operation recently to cure acid reflux and the surgeons noticed that clotting levels in his liver were very low.
“We sent him for blood tests and they came back low again at the back end of last week.
“Basically it means that he would be at risk of internal bleeding if he flew because of the altitude so they said it was definite no, no.
“We are absolutely gutted but Jack’s health has to come first and we just couldn’t take the risk.”
Jack suffers from Beckwith-Wiedemann Syndrome which makes his body and organs grow abnormally large.
He already stands 4ft 2ins tall and weighs 4st 7lb - the size of an average ten-year-old - and his parents claim he could grow to over 7ft tall in adulthood.
Jack was booked in for meetings with leading specialists at a three-day conference on the disease in Denver, Colorado, this week.
The family hoped doctors would be able to offer more advanced treatments for their boy.
But Jack will now have to wait two years until the next conference.
Mum Hayley said the money raised by the community to get Jack over there would be used to fund the trip in 2013.
Donations have come flooding in from people all over the country who first read about Jack’s plight in the South Yorkshire Times in April.
She said: “We have been overwhelmed with everyone’s generosity. A total of £1600 has been raised and that is fantastic.
“The money will sit in an account we have for Jack and it will be used for the next trip.
“We held a sponsored walk several weeks ago which was a great success and I will be looking at organising other events in the coming months.”
She added: “I hope we can keep the momentum going as this trip could change Jack’s life.
“The conference organisers have said the meetings we set up for this week will be transferred to when we go in 2013.”
Hayley said the family hopes to raise enough money over the next two years to help other sufferers.
“We would like to make DVDs and leaflets on the condition for other families to use.
“Jack’s story is already on Facebook and Twitter, and we are hoping to launch a website where people can pick up advice on the syndrome.
“We have become friends with other parents whose children have the same condition as Jack and it would be great to have a platform to share information.
“Not that much is known about Beckwith Wiedemann’s, and we would like to change that.”
Jack is one of only 64 people in the UK with Beckwith- Wiedemann Syndrome.
The disease has left him with an enlarged tongue that hinders his breathing and eating.
He has had three tongue reduction surgeries, and undergone nearly 20 operations in his short life so far.
Doctors have inserted a tube into his stomach to help him digest food better, and he also uses a tracheostomy - tubing in his neck to help him breathe.
His condition also means he is at high risk of tumours.