Amilah Hussain, from Horsham, was diagnosed with aplastic anaemia at Great Ormond Street Hospital in October.
The nine-year-old was taken to her GP due to repeated bruises on her shins, where investigations uncovered low platelet counts.
Aplastic anaemia is caused by bone marrow not being able to make enough new blood cells for the body to function as it should. This makes it harder to fight infection, stop bleeding or carry oxygen.
The family was told that a stem cell transplant was the only chance of a cure, however there was no match for Amilah on the stem cell register.
Amilah’s mother, Mobeen, said: “When we were told Amilah’s diagnosis, they told us the only cure was a stem cell transplant.
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“It needed to be treated soon and would be better when Amilah is well because she’d make a really good recovery.”
Due to Amilah’s Pakistani heritage, she is more likely to have a unique tissue type and less likely to find a donor on UK registers. Even Amilah’s brother, Naa’il, is not a match. So Mrs Hussain has launched an awareness campaign.
Mrs Hussain said: “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.
“Knowing it will be difficult for Amilah to find a donor makes me want to do something.
“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.”
After the transplant, healthy stem cells will be introduced into Amilah’s bloodstream to help her body grow and produce new blood cells. The family hopes it will allow her to get back to her hobbies of horse riding and karate.
Mobeen, 42, is issuing a plea to people, particularly of an ethnic minority, to sign up to the stem cell register.
Working with Anthony Nolan, a charity which encourages stem cell donations, Mobeen has launched the Amilah Means Hope campaign to get people to register.
Mrs Hussain explained that Amilah means “hope” in Arabic, which she has embraced for the campaign name.
She said: “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.”
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