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Simon Cook raised £735 from 22 supporters

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Closed 31/12/2017

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£735raised of £2,000 target by 22 supporters

    Weʼve raised £735 to help Yayasan Thalassaemia Indonesia, the charity which supports victims of this incurable disease, and helps prevent its spread in Indonesia

    Bracknell, United Kingdom
    Funded on Sunday, 31st December 2017

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    Story

    Thalassaemia is a cruel, inherited blood disorder. Patients with Beta thalassaemia major – the most severe type of thalassaemia – cannot make normal red blood cells and do not produce enough haemoglobin. This leads to severe anaemia, with consequences such as retarded growth, bone deformities and reduced levels of energy. In the absence of appropriate medical care, affected individuals die at a young age.

    Medical advances in thalassaemia have changed the natural history of the disease, such that it is now both preventable and treatable – a chronic, rather than a fatal, condition. With appropriate clinical management and health care, patients with thalassaemia can lead a near-normal life as integrated, productive members of society.

    The treatment of thalassaemia is lifelong, complex and costly, requiring blood transfusions, bone marrow transplants, treatment of iron overload and other difficult procedures. The majority of patients, particularly in low-resource countries like Indonesia, are children. This is because, without treatment, patients die at an early age. In addition to the struggle faced by patients coping with the disease, thalassaemia has great emotional, social and financial repercussions for families as a whole.

    My wife's family in Indonesia was directly affected by thalassaemia during the 1950s and 60s, a time when no medical information was available to ordinary people, with tragic consequences. Imagine how it must feel to lose one young child after another, without any understanding of why this was happening. Yet this disorder is preventable through genetic counselling. Carriers appear healthy, but have a one in four chance of having children who are affected by the disorder, and a 50% chance of having children who are themselves carriers (diagram from Colin Burnett on Wikipedia).

    In 1987 my wife's parents were founder members of the Indonesian thalassaemia charity, Yayasan Thalassaemia Indonesia. Although medical understanding came too late to help their own children, they strove to do what they could to disseminate information, promote understanding of the disorder to prevent other families suffering the same heartbreak.

    Today the Yayasan Thalassaemia Indonesia continues the important work of disseminating information, providing genetic counselling to prevent the spread of the disorder, and where possible, treatment for its victims. Please give what you can to save an Indonesian family this unnecessary suffering. All your contributions will go to the Yayasan.

    The above photos show blood transfusions organised by YTI. Below is an information video from the UK Thalassaemia Society:

    This Indonesian documentary includes an interview with Bp. Ruswandi, also a founder member of the Yayasan Thalassaemia:

    Updates

    3

    • Simon Cook10 months ago
      Simon Cook

      Simon Cook

      10 months ago

      We have transferred £750 to the YTI account in Jakarta. Thanks again to everyone who helped!

      Update from the Page owner

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    • Simon Cook1 year ago
      Simon Cook

      Simon Cook

      1 year ago
      Update from the Page owner

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    • Simon Cook1 year ago
      Simon Cook

      Simon Cook

      1 year ago

      A big thank you to everyone who has contributed to our Yayasan Thalassaemia Indonesia fund raising drive. Your generosity will help families in Indonesia who are affected by this cruel condition. We have raised £685 so far, which is brilliant. We will keep the campaign going until the end of December, in the hope of reaching four figures!

      Share this update to help us raise more

    1 year ago

    Simon Cook started crowdfunding

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    Page last updated on: 1/23/2018 5:41 AM

    Supporters

    22

    • Anonymous

      Anonymous

      Dec 30, 2017

      If it wasn't for the lastminute nothing would ever get done!

    • Anonymous

      Anonymous

      Oct 22, 2017

      Congratulations Simon, on your birthday and on your fantastic effort raising a large sum for this good cause. Margaret x

      £50.00

    • Denise Tree

      Denise Tree

      Oct 21, 2017

      I hope this helps to reach your target Simon. Thank you for telling us about it.

      £50.00

    • Martin Pyne

      Martin Pyne

      Oct 21, 2017

      Never head of this before Simon. Hope you raise lots of money.

      £20.00

    • Henry and family

      Henry and family

      Oct 18, 2017

      Happy Birthday Simon and great to see you again after all these years.

      £50.00

    • Barley Norton

      Barley Norton

      Oct 16, 2017

    • Robert Draper

      Robert Draper

      Oct 16, 2017

      Best wishes from Bob and Carol

      £30.00

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    About Crowdfunding
    About the fundraiser
    Simon Cook

    Simon Cook

    Bracknell, United Kingdom

    Musician

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