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The shortage of registered donors from minority ethnic background is a situation badly affecting six-year-old Zoha Butt, from Hendon, who is suffering from osteopetrosis, a rare and fatal condition.
Healthy bones develop in a constant process of formation and reformation but this doesn’t happen for sufferers of osteopetrosis. As a result, their bones become overly dense, without enough space for the marrow to produce blood. Transfusions are needed to supply blood and the condition commonly causes blindness, severe nerve damage and blood problems such anaemia. The only cure is a bone marrow transplant.
Little Zoha can't walk or breathe unaided, she is blind and can't talk and according to Great Ormond Street Hospital’s Dr Ashok Vellodi, “Zoha will never regain her sight. The damage that has already been done cannot be reversed, but with a transplant, she would have a good quality of life” – and a normal life expectancy. Without a transplant, Zoha will not live into her teens.
Despite her medical problems, Zoha is a happy child. Just six years old, she already understands three languages - English, Urdu and Punjabi, and she enjoys socialising with classmates at the Oakleigh Special Educational Needs School in Oakleigh Road North, Whetstone.
Zoha’s mother Riffat is leading the search for a donor : "A simple blood test can save a life and we need the local community's full support. As a Muslim, the Quran tells us that saving a single life is saving the whole of humanity. It doesn't matter what blood group you are.”
Her plight has already attracted a lot of media coverage. 'London Tonight' has featured a report of a clinic in Whitechapel, along with an interview with Zoha's family, and Asma Meer of Ibrahim's Appeal.
Satellite Islam Channel 836 also broadcast a 90 minute live special one Saturday evening where Zoha, her parents, Doctor Salman Rehman from King's College and Sameel Meer answered questions from the public.
Many of the questions were about the actual process of donation – a promising sign as it shows that bone marrow donation is acknowledged as permissible in Islam.
The broadcast proved hugely successful as people from all over the country called in to offer their support and there have been over a thousand hits on the website since the broadcast.
Meanwhile, the charity Find the Time, working in partnership with The Anthony Nolan Trust, has been running special campus Find Your Match clinics at Middlesex University, with the help of a dedicated team of student volunteers, who have been going into lectures to appeal for donors
Event co-ordinator Shams Maladwala said: "It's about getting more bone marrow donors on the register the students have gone out with passion and conviction, and we're hoping it will be the biggest student drive in the UK."
The clinics welcomed people aged between 18 and 40, in good health and especially those of Asian, African, African-Caribbean or mixed parentage descent.
"We are still trying to find a donor - she is in urgent need," says her mother Riffat.
