UK child with rare condition launches appeal for funds to pay for life-saving operation

Only a handful people are thought to suffer from the GATA2 the gene mutation in the UK

Oliver Brown has been diagnosed with Myelodysplastic Syndrome (JustGiving)

An eight-year-old boy who became the first UK child to be diagnosed with a rare condition is desperately trying to raise funds for a life-saving operation.

Oliver Brown learned he had Myelodysplastic Syndrome (MDS), brought on by a mutation of his GATA2 gene, after being rushed to hospital late at night following a bad cough.

Only a handful people are thought to suffer from the gene mutation in the UK, with Oliver believed to be the only child.

Doctors initially feared the schoolboy had leukaemia, but they eventually diagnosed him with the much rarer condition.

“We’d never heard of it before, we didn’t know anything about it, we didn’t know what to do about it," said Oliver's father, Mike Brown 37.

“For any parent, going to the GP for a blood test on a Tuesday, getting a call at 8pm telling you to go straight to hospital you know it’s not good news.”

The engineer added: “No one would wish this on their children or anyone else’s children.

"I wouldn’t wish anyone to be sat where I am now. It’s had a huge impact on us.”

The complex genetic condition is also thought to be the cause of Oliver’s deafness.

Oliver is believed to be the only UK child - with most MDS sufferers typically over 50 - who developed the condition as a result of the mutated gene.

MDS is a potentially fatal condition which affects bone marrow production and exacerbates the chance of developing acute leukaemia.

His parents are now fundraising for a life-saving bone marrow transplant as there is a high risk the first could fail.

A leading blood cancer charity said the schoolboy's condition was extremely rare, adding the genetic link was only discovered five years ago.

Oliver with kids entertainer Nutty Noah (Mike Brown)

Matt Kaiser, of Bloodwise, said: “There have been reported cases of people inheriting a faulty GATA2 gene before, but it is incredibly rare – fewer than one in a million people have the fault.”

Currently in Bristol Children’s Hospital waiting for his bone marrow transplant and undergoing chemotherapy, his parents said they were “optimistic” for the future, adding Oliver was his usual “amazing, stunning, charismatic and funny” self.

As the family anxiously wait to see if the transplant will be a success, a process which could take months, they have launched a fundraising page raising £12,000 of their £120,000 target.

The fundraising is in anticipation of a second transplant should Oliver’s body reject the first one.

The NHS rarely funds second operations, which Mr Brown said was a sad but realistic truth of the health service.

“It’s a difficult one. He’s my son but the NHS is strapped for cash. I think they should fund when appropriate, but it’s a difficult question because he's my son I absolutely think it should be funded, but £120,000 is a lot of money”, he said.

The family, including Oliver's five-year-old brother, Benjamin, are pinning their hopes on the current donor who is a 9/10 match.

Rather than wait an unknown amount of time for a 10/10 match, his parent’s, from Plymouth, Devon, decided to proceed with the near-perfect donor.

Oliver Brown is currently undergoing chemotherapy (Mike Brown)

Mr Brown said: “It wouldn’t be worth waiting. If we don’t get on with it his health could deteriorate. The stronger, the healthier you are the better chance you have."

He added: “Oliver’s is a very complicated case, there’s a high probability it won’t be successful, but I’m not thinking about that I’m being positive. If it’s not successful that would be heart-breaking, devastating.”

But he stressed how important it is for people to register as potential donors.

The dad-of-two said: “I’ll re-mortgage the house, I’ll sell my house, work four jobs, I’ll do anything to get the money.

“But if Oliver does need a second transplant, if there’s no one on the register I could have £210 million it wouldn’t make a difference because there’s no match.”

If a second operation is not needed any leftover funds will be split between charities Anthony Nolan and Clic Sargent.

Mr Brown added they had been overwhelmed by the support from family, friends and strangers.