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Interview 16 - Screening for sickle cell and beta thalassaemia

Brief Outline: Mother discovered she was a beta thalassaemia carrier in first pregnancy. Husband still in Bangladesh and wasn't screened. Son born with beta thalassaemia major but has now had a bone marrow transplant. Video and audio clips in Sylheti.
Background: Married couple with two children aged 11 and 2. Mother aged 31, full-time mother. Father aged 34, unemployed. Ethnic background/nationality' Bangladeshi.

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They have drawn strength from their Islamic faith in caring for their son during his bone marrow transplant. They believe medical innovation is God-given. (Video in Sylheti.)

They have drawn strength from their Islamic faith in caring for their son during his bone marrow transplant. They believe medical innovation is God-given. (Video in Sylheti.)

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English translation, video and audio clips in Sylheti.

How else can we help families, what can we do to help families like yourselves?

Mother' To give us hope and faith.

What advice would you give them? 

Father' Although we don't really have the skills to give advice, we would say that within your family, if you do suffer from such illnesses, then you should uptake the recent developments and advances with medicine. Always keeping faith with Allah's powers, I would say to try what the doctors are offering, perhaps it will be successful. With full faith in Allah. Allah has said to benefit from medical advances. We don't know how the illness will progress, for that reason; it is important to inspect any new inventions or advances in the medical profession that may return the patient to good health. I also feel that although the treatment processes such as carrying the bag, the injections, with older children it can be difficult; I have seen it benefiting my son. You have seen too. Allah has blessed my son. The rest is up to Allah. I would also hope that other families place their full faith in Allah. If their son and daughters are patients, then to take the advice of medical professionals

They need to be brave?

Father' Yes, keep your mind strong. 

Isn't it stressful staying in a hospital? Going there and coming back takes a toll.

Father' That's right, but whatever befalls you, you have to confront it and go forward, you can't keep looking backwards that's not going to work, you have to advance. My wife has said 8-9 years, I wasn't here, without me.
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