Living with thalassaemia: For parents of two suffering children, every day is a battle

Published: July 27, 2013
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 The parents have appealed to Punjab Chief Minister Shahbaz Sharif and other philanthropist for financial support to save the lives of their children.

The parents have appealed to Punjab Chief Minister Shahbaz Sharif and other philanthropist for financial support to save the lives of their children.

ISLAMABAD: 

Around the globe expecting parents start planning about how to make their unborn children’s future brighter. However, Kareema Bibi and her husband Mohammed Ismail have to fight every day just to try and give their children a chance at living into the future.

“My elder son, Mohammad Raees, 8, needs a blood transfusion  after every eight days, while my youngest, Mohammad Naseer , 3, needs one every ten days. We are very poor and cannot afford to buy blood bags for them. Each one costs Rs 200 and sometimes more, but what can we do? We cannot see them dying like this,” said Kareema.

The family lives near Chaklala Scheme III in Rawalpindi on Ismail’s limited earnings as a daily-wage labourer. He hardly earns Rs 200 to Rs300 per week and has to pay Rs6,000 per month on house rent and utility bills.

Kareema and Ismail are cousins and have had six children together. They said that before getting married, they knew nothing of thalassaemia, the hereditary blood disorder threatening the lives of their children.

The disease only occurs when both parents carry the thalassaemia gene, even if they do not have the disease itself.

“We first learnt about thalassaemia when one of our sons was diagnosed. At that time, we could not afford blood transfusions for him and he died at the age of seven,” said Kareema Bibi.

Instead of toys and books, Raees and Naseer were carrying syringes in their hands, which are used to administer Desferal — a drug which to manage iron in the bloodstream of transplant recipients.

“My children are living with unbearable pain. Naseer is too young to understand the disease and how to carry a syringe. He usually just plays with them like toys,” she said.

The thalassaemia centre at Pakistan Institute of Medical Sciences (Pims) recently refused to continue treatment for Raees as his case has become complicated.

“He has enlarged spleen and liver, due to which his stomach has swollen and doctors have suggested that we either continue blood transfusions or opt for a surgery, which we obviously cannot afford,” she lamented. She said Raees wants to play like other children his age, but cannot because of his illness.

“Most of his life has been spent in beds, either in hospitals or at home,” she said.

The parents have appealed to Punjab Chief Minister Shahbaz Sharif and other philanthropist for financial support to save the lives of their children.

Meanwhile, talking to The Express Tribune, a senior doctor at the thalassaemia centre of Holy Family Hospital (HFH) who wished not to be named said there are only two thalassaemia centres in public hospitals around the twin cities. Pims has around 1,800 patients registered, while HFH has 200.

“Thalassaemia is a common blood disorder which is increasing in incidence. The issue is that people are not very aware of it. Very often, couples only learn about it when their newborns are diagnosed with thalassaemia major. From here, the real struggle starts as they must arrange blood every few weeks or months,” she said.

She urged the government to create awareness among people to get tested for thalassaemia before getting married to ensure that both parents do not carry the thalassaemia genes.

Published in The Express Tribune, July 27th, 2013.

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Reader Comments (8)

  • Rehan
    Jul 27, 2013 - 11:04AM

    As always, the culprit, the reason for this child’s daily suffering is cousin marriage. Stop this practice now.
    Also – genuine question: Do these people not have surnames? Or do they choose to have just a first name? :/
    Regards,
    Rehan

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  • Buksh
    Jul 27, 2013 - 11:19AM

    Assalamoalaikom,

    Can I get the contact number of those people for a help, please send me to [email protected]

    Thanks

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  • Kamran Khan
    Jul 27, 2013 - 11:59AM

    Confiscate gilani, zardari and others’ money accumulated during the last five years of corruption tenure and spend it for the welfare of people

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  • Just got it
    Jul 27, 2013 - 1:14PM

    Just got their contact details if anyone wants to help them can talk to them on these number 0300-9885041 and 0304-5235499.

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  • Zubair
    Jul 27, 2013 - 2:28PM

    I don’t think after reading this article, that Thalassaemia is caused by cousin marriages. It happens when both mother and father carry gene of Thalassaemia. It can happen even in non-cousins.
    I support that cousin marriages should be avoided as these marriages cause genetical issues.

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  • Insaan
    Jul 27, 2013 - 7:36PM

    @Zubair: It happens when both mother and father carry gene of Thalassaemia. It can happen even in non-cousins.

    If people keep inbreeding (relative marriages) chances of both husband and wife carrying any genetic disease increase a lot.

    A simple blood test can show if a person has thalassemia minor. If both parents have thalassemia minor prenatal testing should be done to see if child is thalassemia major. There may be a 25% chance of child being thalassemia major. Thalassemia major means blood transfusion is required every week or so.

    Prenatal Testing can be done before a baby is born to find out if it has thalassemia and determine how severe it may be. Tests used to diagnose thalassemia in fetuses include:
    Chorionic villus sampling. This test is usually done around the 11th week of pregnancy and involves removing a tiny piece of the placenta for evaluation.
    Amniocentesis. This test is usually done around the 16th week of pregnancy and involves taking a sample of the fluid that surrounds the fetus

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  • umar
    Jul 28, 2013 - 12:46AM

    My name is umar farooq and I am thalasemia major patient ….you cannot prevent it unless u implement the law to get tested before marriage …its not about cousin marriage so Mr rehan pls don’t comment about something that you don’t even know …NGOs like thalasemia patient and parent society ,omair sana welfare ,fatmid foundation ,hussaini ,kashif ianal thalasemia center ,TAP ,etc are working very very hard to prevent this disease but it cannot be stoped unless our government is serious on these issues …and don’t just sit and wait for government to do everything …people should go to hospitals and get tested so that your child can have a better life

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  • umar
    Jul 28, 2013 - 12:51AM

    Every year there are 5000 new thalasemia major patients

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