After a long legal battle, Raj and Shahana Hashmi won the right to use genetic testing to select an embryo free from beta thalassaemia. The stem cells of their 'saviour sibling' could be used to treat their son Zain's illness. However, despite repeated attempts, Shahana has miscarried several times following the IVF treatment. They plan to try again in the New Year, but are also continuing their search for a suitable bone marrow donor. In this commentary, Shahana outlines a new project that might also help Zain:
"On Wednesday 24 November 2004, we are staging a conference at the Natural History Museum London to launch a new campaign to get more people on the bone marrow register. We particularly want more Asian, mixed race and black donors to come forward. Also, we want to launch an annual international blood and bone marrow awareness and donation week.
Bone marrow transplantation has revolutionised the treatment of many blood disorders in children, and has dramatically improved the cure rates. Inevitably, a successful outcome depends on the availability of matched donor marrow. Though there are quite a large number of people on the bone marrow donor registers, most of these are Caucasian, which means that they cannot be donors for patients from ethnic minorities. Children from ethnic minorities are thus severely disadvantaged.
We must all work together to increase the awareness of this problem, and motivate and encourage ethnic minorities to become potential bone marrow donors. This means overcoming many cultural dogmas but can be done, firstly by bringing this problem to the public attention, and then targeting the ethnic populations through both national agencies and local charitable organisations. I hope we can make this a high-priority activity, so that all children of our country and worldwide can benefit from these treatments which will not only improve the chances of curing their illness but also allow them to thrive and lead normal, healthy lives.
Our precious son Zain suffers from a rare hereditary illness. He was diagnosed with the blood disorder beta thalassaemia major when he was four months old. The condition causes potentially fatal iron levels to accumulate in his body, caused by the life saving blood transfusions he has to keep him alive every four weeks. This can only be reduced by a 12-hour infusion of drugs being pumped into his tiny body via a drip attached into his tummy almost every night. Without this treatment he would die.
We watch Zain suffer, his tiny body bruised by the needles. Hurting the one you are supposed to protect and love is unbearable, and the drugs have nasty side-effects. Zain already suffers from night blindness, aching muscles and limbs, swollen legs, sickness, rashes and tiredness. The disorder also affects the immune system, making Zain more prone to infections. His only chance of a cure is a bone marrow transplant. But a worldwide search for a perfectly matched donor has so far drawn a blank. We are desperate to end his suffering, and save his life.
At the conference, Zain will stand in front of the world's media and medical professionals to make an emotional plea to the public to join the Bone Marrow Register, in the hope that one person will be a perfect match and provide the cure he so desperately needs. He will say 'I have got broken bone marrow and I want to get better. I have had over 100 blood transfusions and I have a drip in my tummy or legs five nights a week for 12 hours. I don't want the medicine any more because it hurts. I want to get better and all my friends with broken bone marrow want to get better. Please help me'.
Zain has been our guiding light - he is the driving force that allows us to continue and he has been the inspiration for the new campaign. Zain knows that we so desperately want him to get better. Now he is ready to do something about it and say something. It is fantastic to get a child's perspective on this. We are not asking for money, just a tablespoon of blood.
It is very difficult, almost impossible, to just sit back and relax, We have had to fight tooth and nail for everything, and stopping just isn't an option. I want Zain to know regardless of what happens that we have done everything, that we have left no stone unturned in our quest to find a donor for him. Of course, we hope that if more people join the register we might find a match for Zain. It would be amazing and we would be over the moon. If all else fails we have faith that science is moving so quickly that hopefully it will not be long before scientists will be able to grow the stem cells that Zain needs. Until then, we just pray for patience, and more of it".