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Parents' plea to donors to save poorly son's life
A little boy suffering from an incredibly rare medical condition which means a common cold or chicken pox could kill him needs a stranger to come forward to save his life.
Six-year-old Uzair Akhtar has a rare genetic disorder which affects just 50 people worldwide. It means his immune system can’t fight the simplest infection.
He takes a daily cocktail of antibiotics and immunoglobulin therapy straight into his stomach to keep his condition stable.
A life-saving bone marrow transplant is his only hope of a cure but so far charity Anthony Nolan which runs the UK’s largest bone marrow register, can’t find him a matching donor.
Now his family – parents Sufia Rashid and Pervaiz Akhtar and three-year-old brother Eisa, of Lidget Green – are calling on people to come forward to join the Anthony Nolan bone marrow register in a bid to find a match. The campaign’s first recruitment drive takes place in Bradford on February 12.
Mrs Rashid said: “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.”
Despite being bright and bubbly, Uzair, a pupil at Lidget Green Primary School, was a poorly baby who caught every bug he came into contact with.
“We knew something wasn’t right with Uzair pretty early on,” said Mrs Rashid. “It was incredibly scary as although doctors knew there was a problem, they couldn’t work out why he kept getting so sick.”
When he suffered a nasty bout of salmonella aged four, doctors started running more serious tests.
“They thought he might have leukaemia and we had an agonising wait for the results,” said Mrs Rashid. “When these came back clear, they were at a loss.”
It is only recently that Uzair has received a diagnosis. He has a disorder called Hyperimmunoglobulin E syndrome (HIES) which is caused by a mutation in his DOCK8 gene, which controls the body’s response to infection.
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.”
Anthony Nolan and Uzair’s family are holding a recruitment event on Tuesday, February 12 from 11.30am to 3pm at the Jamiyat Tabligh ul Islam Mosque in Lidget Green, Bradford.
Potential donors should be between the ages of 16-30 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 a bit like giving blood.
Rebecca Sedgwick, 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.
“Anyone aged 16-30 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.”