Bone marrow donor appeal for boy who could die from a cold

Uzair Akhtar has a rare genetic disorder which means his immune system cannot fight infection and a common cold could place his life in danger.

Doctors say the six-year-old from Bradford needs to have a life saving bone marrow transplant.

But the charity, which runs the UK’s largest bone marrow register, has been unable to find him a matching donor.

It warns that patients from ethnic minorities have a far smaller chance of being able to find a donor.

Both the charity and Uzair’s family are now appealing for more members of the Pakistani community to come forward to help give people like the him a better chance of finding a match.

Next month they are holding an event in Bradford to allow people to sign up.

Uzair’s mother, Sufia Rashid, said: “We knew something wasn’t right with Uzair pretty early on.

“Despite being bright and bubbly, he was a very poorly baby and caught every bug he came into contact with.

“It was incredibly scary as although doctors knew there was a problem, they couldn’t work out why he kept getting so sick.

“After a nasty bout of salmonella when Uzair was four, the hospital started running more serious tests.

“They thought he might have leukaemia and we had an agonising wait for the results to see if his bone marrow was working.

“When these came back clear, they were at a loss.”

It is only recently that Uzair has received a diagnosis.

Doctors have discovered he suffers from a condition so rare that there are only 50 known cases across the world.

Uzair has been diagnosed with a genetic disorder called Hyperimmunoglobulin E syndrome (HIES).

The condition is caused by a mutation in one of his genes, which controls the body’s response to infection. It means that Uzair’s immune system cannot fight the simplest infection – and a common cold or cough could put his life at risk.

To try to keep his condition stable, Uzair has anti-viral drugs and immunoglobulin therapy going straight into his stomach on a daily basis. A bone marrow transplant from a matching donor is Uzair’s only hope of a cure.

Mrs Rashid said: “When we heard a bone marrow transplant could cure Uzair we were over the moon.

“But this quickly turned to fear as our family was tested and no one was a match for Uzair.

“He needs a transplant from a stranger, but so far there’s no one on the Anthony Nolan bone marrow register who’s a suitable match.”

Rebecca Sedgwick, the national recruitment manager at Anthony Nolan, said: “We need potential donors from the Pakistani community to join the register to give patients like Uzair a chance of life.

“Patients who are white northern European have a 90 per cent chance of finding a match, but this falls to 40 per cent for patients from minority ethnic backgrounds.”

Anthony Nolan and Uzair’s family have organised a recruitment event on Tuesday February 12 at the Jamiyat Tabligh ul Islam Mosque in Lidget Green in Bradford. Potential donors should be between 16 and 30 and in good health.

Joining involves filling in a simple medical questionnaire and providing a saliva sample. Donating bone marrow is usually done through a process similar to giving blood.

Mrs Rashid added: “Uzair knows he’s different; he says ‘mummy, I’m a bit more poorly than most people’ and I explain it’s because he needs some special blood to help him feel better.

“By signing up as a potential lifesaver with the Anthony Nolan register, you could give a family like ours the hope we desperately need.’

Mrs Sedgwick added: “Anyone aged 16 to 30 who can’t attend the event can join online at 
www.anthonynolan.org.

“We especially need donors from all minority ethnic backgrounds to join, so please do visit our website to find out more.”