Shahera Khan was a happy, healthy baby, doted on by her parents Amina and Shafin and her protective older brother Amaan, 6, but she developed various illnesses when she was a year old. “In 2018 she started showing signs of a mysterious rash and was referred to both immunology and dermatology,” explains her mother Amina. “She had bronchiolitis twice and a sepsis infection, then a constant cough.
“We were very worried and the hospital was reassuring, with her doctors determined to find out what was wrong. Shahera was then diagnosed with a very rare immunodeficiency disease which means she can’t produce enough white blood cells to fight off infections. She’s taking pre-emptive antibiotics to protect her against serious bacterial infections but her best option is a stem cell transplant.”
The doctors don’t want to wait any longer than five years because, sadly, children with this condition who were treated when they were older didn’t survive. “They don’t want to take that risk with Shahera so they would like to do the transplant as soon as possible,” says Amina. “Anthony Nolan searched the register – the UK one and the international one – but there isn’t a match so with Anthony Nolan’s support we’ve launched an appeal to find a donor. All our family members have been tested but none of them are a stem cell match. The uncertainty is really hard.”
Growing the stem cell register is the charity's number one priority to help more children like Shahera find their match. Each new stem-cell donor costs £40 to recruit to the register and determine their tissue type so they can be matched to waiting patients. To make the best use of their limited funds, the charity changed its strategy in 2012 to asking only for stem-cell donors aged 16-30, as research had proven that donations from that age bracket had the biggest impact on saving lives.
“Shahera should be starting nursery and making friends but that’s on hold just now as she needs to be sheltered. We need to find Shahera a donor as soon as possible so she can have a long and happy life, and we need to raise awareness in the Asian – and particularly Bangladeshi – community so more people come forward - not only to help Shahera but for anyone who needs a donor. It’s upsetting that there is no match for Shahera and other people from Asian backgrounds.
“Every financial donation is so valuable to the charity as it allows them to recruit more stem cell donors. Please donate if you can.”
The Khans’ situation is one that Professor Charlie Craddock, who has worked with Anthony Nolan since the early 1990s, is all too familiar with. As director of the Blood and Marrow Transplant Unit at Queen Elizabeth Hospital in Birmingham, the availability of donors is a subject always on his mind. “At the moment patients from a northern European background have a 69 per cent chance of finding a donor but for patients from a minority ethnic background this drops to only 20 per cent,” he says. “I would like to see a situation where everyone has the potential for a match.”
Amina and Shafin know how important it is for Anthony Nolan to raise critical funds to find matches for patients like Shahera. “We have to believe that we’ll find a match but sometimes it feels so strange that this is our little girl going through this,” says Amina. “We would do anything for her to have a transplant, to get rid of her disease and give her a whole new start, and it’s not easy knowing that we’re depending on the kindness of strangers to save her life.”
Without your support, there is no cure
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