Last March, Amina Mulla's son Yaaseen came down with a very rare illness.
Since then Amina has faced a constant battle in searching for a suitable bone marrow donor for her two-year-old son if he needs one in the future. Here she speaks to Asian Image about how the illness has changed her life and that of her family's.
Yaaseen suffers from a rare illness called Myeslodysplastic Syndrome. The syndrome is a group of disorders affecting the bone marrow. They are not types of cancer, although in a small number of people they can develop into a particular form of leukaemia.
However, the symptoms are often very similar to those caused by cancer and the treatments used are also similar.
When Yaaseen was diagnosed with the illness Amina of Burwell Close, Bolton, says she knew very little of the syndrome. "I had to search around for information myself. We were very shocked at the time as we didn't know what to expect. What was more distressing was how it was very rare in children and many of the doctors don't know why it occurs."
"He was diagnosed in March and had earlier been suffering fom nose bleeds and bruising. The bruising developed overnight so we took him to hospital.
"The hospital have been very helpful since then but because it is such a rare illness in children there has been very little information forthcoming."
The syndrome is more common in elderly people but can occur at any age. Most cases of myelodysplasia have no known cause.
The syndromes are often separated into either low or high-risk disease depending upon the number of abnormal cells that are seen in the bone marrow and how the disease is affecting you.
Amina added, "Yaaseen might need a transplant in the future but he doesn't need one yet. I wanted people to know about these kind of disorders. In all honesty if you mention myelodysplastic syndrome to someone they won't know what you are talking about. If you mention leukaemia then they have a bit more understanding but even then it is very little."
"I think more should be done to create awareness in not just the Asian community about these kind of syndromes."
"At the moment Yaaseen must go to hospital for checks once a month."
Because Yaaseen is of mixed race, finding a donor is proving to be even more difficult for Amina. "A mixed race donor is rare and we would need one who is aged under 18. We have tested our two other children and they are not suitable."
"There are a couple of children in America who are on the donor list but so far in England they haven't found anyone."
"I believe the only way to eradicate the illness through a bone marrow transplant."
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