A mother from Leeds is appealing for more Asian people to sign up as potential stem cell donors after her baby son’s life was saved by a stem cell transplant from his young sister.
Zahra Hussain, 29, is calling for more people from ethnic minority backgrounds to join the blood cancer charity Anthony Nolan’s register of people willing to be stem cell donors.
The pharmacist’s one-year-old son, Dawud Raza, was saved by a stem cell transplant after he was diagnosed with a very rare illness that causes immunodeficiency when he was just five months old.
Zahra knows that Dawud was very lucky to have a sister who was a perfect match for him as he would otherwise have been dependent upon Anthony Nolan finding him an unrelated donor, which is much harder for people from an Asian or other ethnic minority background. Only around a third of patients find a match in their own family.
Zahra, who is of Pakistani origin, said: “Without the transplant Dawud wouldn’t have survived but he is now a happy, smiley baby. My daughter, Khadijah, is only three but she saved his life.
“He was very lucky to have found a match in his sister as otherwise he would have had to rely on a register which is short of South Asian donors – his fate would have been in a stranger’s hands and he might not have had such a good outcome.
“There was only a 25 per cent chance that Khadijah would be a match and we were warned that finding a match for Dawud on the register would be difficult because Asian people are underrepresented. It could so easily have been a very different story.”
Dawud was a healthy baby when he was born in October last year but when he was just a few months old he developed a severe rash and his parents noticed that he had gone off his food and become irritable and seemed unwell.
His parents, including his father who is a GP, were concerned that he might have meningitis so rushed him to hospital where he was treated for the illness.
However, it soon became clear that meningitis was not the cause of Dawud’s illness and for 10 days doctors were unable to establish the cause.
However, eventually a bone marrow biopsy revealed that he had a very rare genetic condition called HLH (haemophagocytic lymphohistiocytosis), an illness in which the body’s immune cells don’t work properly. It causes the immune system to attack healthy tissue and is fatal without treatment.
Dawud was immediately started on chemotherapy to manage the condition and his parents were told he would need a stem cell transplant to survive.
They were also warned that it could be difficult to find a matching stem cell donor for him because of his South Asian heritage.
Doctors began by testing his sister, Khadijah, even though there was only a 25 per cent chance that she would be a suitable match.
Fortunately, Khadijah was found to be a perfect match for Dawud and the transplant went ahead on June 5 this year after she donated her bone marrow to Dawud.
Khadijah made the donation under general anaesthetic because her age meant she wasn’t able to donate through the more common method which is like giving blood.
Zahra said: “We were very lucky Khadijah was a match. We were extremely thankful for that, particularly as we knew his chances of finding an unrelated match were low.
“It was a real relief when we learned that she was able to be Dawud’s donor – we were over the moon.”
Thanks to his sister, Dawud is now a happy, healthy baby again. He still has to be fed through a tube but he is recovering rapidly and it is hoped that the transplant will have cured his HLH.
As his parents know how close Dawud came to needing to find an unrelated donor, they are now encouraging more South Asian people to join the Anthony Nolan register to help other children like their son.
Zahra said: “Khadijah is a three year old girl and she has already saved a life, and yet there are so many adults who are fearful of the process of donating their stem cells, and awareness is especially poor in our community. People need to know that donating is very easy and won’t cause them any harm. If more people understood how important it is, more people would sign up.
“We met other children who were looking for unrelated donors and we saw how difficult it can be. People from every community should sign up.”
She added that anyone aged 16 to 30 who is in good general health can join the Anthony Nolan register and that signing up just involves filling in a simple online form and providing a saliva sample.
Most people who sign up will never be asked to donate, but for those who are, 90 per cent donate through a simple outpatient procedure which is very similar to giving blood.
The remaining 10 per cent donate through the same method as Khadijah and this typically just involves a short operation and a one night stay in hospital.
If you are 16-30 and in good health you can sign up to the Anthony Nolan register at https://www.anthonynolan.org/8-ways-you-could-save-life/donate-your-stem-cells.