The mother of a nine-year-old girl from Sussex, recently diagnosed with a rare blood disorder, is appealing for young people to join the Anthony Nolan stem cell register to help save the lives of patients in need of transplants.
Following repeated bruising on her shins Amilah Hussain, from Horsham, had blood tests to identify the cause. A referral to Great Ormond Street Hospital was made after multiple blood tests showed low platelet counts. In October Amilah was diagnosed with aplastic anaemia, a rare illness where the body stops making enough new blood cells. The condition makes it harder for people to fight infection, stop bleeding, or carry oxygen which can lead to severe and debilitating sickness.
While Amilah, which means ‘hope’ in Arabic, is currently doing well, aplastic anaemia can be fatal if left untreated. Doctors have recommended she has a stem cell transplant: a treatment to introduce healthy stem cells from a donor into her bloodstream to grow and produce new blood cells. The transplant may be Amilah’s best chance of survival and route back to her hobbies including horse riding and karate. But there is, currently, no matching stem cell donor for her to have this treatment.
Mobeen, Amilah’s mother, is working with Anthony Nolan to raise awareness of the stem cell register and highlight the need for more young people aged 16-30 to sign up.
Mobeen says: ‘When we were told Amilah’s diagnosis, they told us the only cure was a stem cell transplant. It needed to be treated soon and would be better when Amilah is well because she’d make a really good recovery. We thought that Naa’il, her older brother, would be a match; when he wasn't, we found out about Anthony Nolan’s work.
‘When we looked into it, it seemed there’s a lack of donors suitable for patients from ethnic minority communities. The general awareness is just not there.’
Amilah has Pakistani heritage; patients from minority ethnic backgrounds are more likely to have a unique tissue type and less likely to find a donor on UK registers compared to those from white, northern European backgrounds. In addition, just 16 per cent of potential donors across the aligned UK registry are from a minority ethnic background.
Amilah, who is fondly known as Milly by friends and family, doesn’t want to stop doing more of the things she loves or stop going to school, because of the aplastic anaemia.
Mobeen is sharing her family’s story to raise awareness of stem cell donation in their local community and help Anthony Nolan build and diversify the Anthony Nolan register.
‘Knowing it will be difficult for Amilah to find a donor makes me want to do something,’ says Mobeen.
‘Until this happened, I didn't realise that this [stem cell donation] is something people can do. It’s why I’m doing this. Stem cell donation is giving a gift of life; it's such a precious gift to give anyone.’
Yasmin Sheikh, head of policy and public affairs at Anthony Nolan, says: ‘Finding a donor for Amilah would mean giving her a second chance at life.
‘We need more people aged 16-30 in good general health to sign up to the Anthony Nolan register.
‘Amilah’s donor will most likely share her background, which is why we’re particularly calling on people with Pakistani heritage to join the register and give someone like Amilah hope for the future.’
Anthony Nolan established the world’s first register of donors willing to donate their stem cells to people with blood cancer or blood disorders 50 years ago. Joining the register involves completing a health questionnaire and providing a cheek swab sample which is used to determine a donor’s tissue type.
The Anthony Nolan register is used to match patients, like Amilah, in need of a stem cell transplant with compatible donors. Mobeen is leaning into hope, embracing the meaning of her daughter’s name. ‘Amilah means hope’ she says.
‘Hope not just for herself but for all those who need a hero right now and for all those who will need one in the future. Most heroes are ordinary people who do extraordinary things. Signing up to the Anthony Nolan register is a chance to change a life and gift someone hope for the future.
‘She means a lot to a lot of people.’
People aged 16-30, who are in good health can sign up to the Anthony Nolan register at anthonynolan.org/AmilahMeansHope