‘All we want for Christmas is gift of life for our Josh’
THE parents of a brave youngster who is being crushed to death by his own body say all they want for Christmas is help to save his life.
Joshua Burns-Adair from Cheadle Heath suffers from a rare form of dwarfism called Jeune’s Syndrome. It affects just his ribs, which are crushing his internal organs. Now his desperate mum and dad are attempting to raise £1.5 MILLION for an operation in the USA after doctors in this country said there is nothing more they can do.
Dad Mark said: “All we want for Christmas is help to raise that money and get Joshua this operation, and give him a good life.”
THE parents of a young boy being crushed to death by his own body say all they want for Christmas is help to save his life.
Joshua Burns-Adair has already defied the odds to survive, after being given just a one in 56 million chance of being born alive.
The five-year-old from Cheadle Heath was born with a rare type of dwarfism called Jeune’s syndrome which only affects his rib cage.
It means that compared to the rest of his body, his ribs are just a fraction of the size, and his larger internal organs are being crushed as a result.
Joshua underwent two operations to break and extend his ribs to help him breathe.
But just months after he ended up in hospital fighting for his life due to complications from his condition.
He now has two metal titanium plates each side of his rib cage, but doctors at the Royal Manchester Children’s Hospital have told parents Mark and Amanda that there’s nothing more they can do.
The couple, who have another son named Ethan, 10, began researching a way to save their little boy and discovered a procedure called VEPTR (Vertical Expandable Prosthetic Titanium Rib), a device designed to support a deformed chest wall cavity through the use of titanium rods.
Mark says the surgery is available at Sheffield Children’s Hospital, but for whatever reason they cannot carry out the procedure on Joshua.
Determined to save his son, he found several hospitals in America that offered VEPTR – but at a huge cost of $1.5 MILLION.
Mark said: “There’s a hospital in Philadephia which specialises in the operation and they’ve looked through Joshua’s scans and files and are happy to carry out the procedure.
“They came back with a cost – $750,000 for each side, and that’s excluding the nine years after care he would need.
“I was gobsmacked when I found out how much it would be, I knew it would be more than the £100,000 fundraising page I’d set up, but I never thought it would be as much as that.
“But we are still determined to do everything we can to raise the money.
“We’ve met other people through online support groups who have children with the same syndrome as Joshua.
“One little boy who is a year younger than him had the VEPTR at the hospital in Philadelphia and his life has been transformed.
“He’s riding bikes and running around – everything we want for Joshua.”
The family are a long way from their target, with just £24,000 in the pot.
Mark added: “All we want for Christmas is help to raise that money and get Joshua this operation and give him a good life.
“We’ve had so much support already, and we are so grateful, but we need more.”
Keep your eye out for fundraising events organised by the family and supporters in the New Year, you can also donate via the GoFundMe page gofundme.com/joshuaburnsadair.