Pulling faces with his big sister, George Johnson seems just like any other small boy.
But the four-year-old’s beaming smiles belie a life of torment that has seen him endure 75 operations to treat a mystery condition that doctors are still no closer to diagnosing.
In fact, it is a medical mystery so rare that no one else in the country has suffered from it – and doctors treating him have resorted to naming it the George Syndrome after the brave schoolboy.
“It’s a parent’s worst nightmare,” says George’s mum Emma, 32.
She and George’s dad Neil, 33, have watched on helplessly as their son endures seemingly endless treatment and suffers unremitting pain.
The condition has left him unable to eat, swallow or digest food, meaning he has to have nutrients pumped directly into his body as well as spending more of his life in hospital than out of it.
Although doctors at Great Ormond Street, where George is being treated, have suspected several conditions, none has been diagnosed.
So now the family, from Wallasey, Merseyside, are fundraising for a trip to America in the hope of a diagnosis – and ultimately a cure.
“America is a bigger country with more people, so the hope is that somebody out there will have seen a child or adult like George and can help us,” says Emma.
“George has undergone 75 procedures in total. You name it; he has had it done,” adds Neil. “There have been some very major, very complicated operations.
"He has a thing like a colostomy bag to reduce the excruciating pain he is in. He has spasms of severe pain. He has broken bones because of poor nutrition. And, of course, there are constant X-rays and other minor treatments.”
George, who has an older sister Ava, five, has to wear a backpack containing intravenous drips and tubes to deliver his medication.
Although he is in constant pain, George’s family say he never lets it hold him back.
“He’s such a little character,” beams Emma, who had to give up her job as the beauty manager in a department store to look after him.
“You can’t quite believe what he goes through sometimes because he’s got such a big personality.
“He’s funny, outgoing and really social – he loves being everyone’s friend. He’s desperate to be the same as everyone else.
"So even if he’s feeling really poorly and has had a bad night, I’ll ask if he’d rather stay home than go to school but he’ll say, ‘No, I’m going in’. He’s determined.”
Andy Stenning/Daily Mirror
Although George was born in seemingly good health, problems soon showed when his parents started feeding him.
“He stopped breathing about 12 times in the first days of his life,” says Neil. “We ended up having him in Alder Hey Hospital in Liverpool for seven months, but we were getting nowhere.
“He looked like a lollipop because his body was completely disproportionate to his head.
“We had to take him to see a specialist paediatrician at Great Ormond Street. That was supposed to be for a week but it turned into five months. He kept coming home and then having to be readmitted. So to get him to the age of four has been miraculous.
"His last procedure was three weeks ago when he had to have all of his teeth removed. All of the reflux that comes up and the medicines he has been on have eroded all his teeth, which has become an infection risk.”
Having exhausted many options in Britain, Neil and Emma are pinning their hopes on George’s planned consultation at the specialist children’s hospital in Columbus, Ohio, in three months.
It is a trip they are taking with the blessing of George’s doctors at Great Ormond Street.
But it comes at a heavy price. Fees for the consultation with world-renowned paediatrician Carlo Di Lorenzo will be at least £15,000.
If there is a realistic chance of a final diagnosis the family could end up staying for longer, for which they will require even more funds.
Daily Mirror
His parents are hopeful they might at last get some definitive answers.
“Each discussion we have contradicts the one we’ve had previously,” says Neil, who works for a wealth management company.
“They talk about a transplant of his bowel and his whole stomach – and then at Great Ormond Street another consultant said he didn’t think that would work.”
“We live in the here and now,” adds Emma. “No-one knows how George is going to be in the future.
"If someone could tell us everything would be OK and he would get better, I would never ask for anything else, ever again, in my life.”
To make a donation towards George’s consultation in America, go to gofundme.com/teamgeorge or follow @_teamgeorge
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