The boy who has undergone 75 operations
- But is yet to receive a diagnosis
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.
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.
Culled from mirror.co.uk