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Kerry Cooke raised £270.55 from 19 supporters.


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Closed 29/03/2017



£270raised of £1,000 target by 19 supporters

    Weʼve raised £270 to I'm raising funds for research into BPAN a sub category of NIBA, the rarest of the NBIA conditions. https://m.facebook.com/NBIABPAN/

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    Funded on Wednesday, 29th March 2017

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    I am a mother and Occupational Therapy Student, for 9 years my daughter, Heidi or Doodles, had the general diagnosis, given when they don't really know what's causing disability in an individual of 'Global Developmental Delay', that's a pretty positive term right? 'developmental delay', the hope that she can develop and, no matter what some development would be achieved, then on 25th November 2016, around 12.21 at LRI, Genetics Department, the wonderfully brilliant Consultant Geneticist Gabriella Jones delivered the most heart shattering news any parent would hate to hear, that Heidi has NBIA (neurodegeneration with brain iron accumulation) not only that, but, Heidi has the rarest of conditions under that umbrella of NBIA which is BPAN (beta-propeller protein assisted neurodegeneration), basically, Heidi is going to suffer the symptoms of dementia, in particular Parkinsonism, her cognition will decline, she may lose her sight (likely actually), she will suffer through painful muscle seizures (dystonia) amongst other symptom. To date there is no cure, she can be treated with Parkinsons meds (L-Dopa, being common), but they also cause hard earned loss of gains in development, not as positive as 'delay' is it? This is decline.

    We are raising funds for research....please give as generously as you can.



    Kerry Cooke

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      1 year ago

      Kerry Cooke started crowdfunding

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      Page last updated on: 2/1/2017 12:31 AM



      • Chris Ingram

        Chris Ingram

        Feb 1, 2017


      • Emma Meadows

        Emma Meadows

        Jan 31, 2017

        Good luck with it Kerry :)


      • Nicola Corness

        Nicola Corness

        Jan 31, 2017



      • Deanna  Florio

        Deanna Florio

        Jan 31, 2017

        Dont tell me off !!! 😍

      • Anonymous


        Jan 31, 2017

        hopefully i will be able to help more in the near future.here's to giving Heidi a better future

      • Anonymous


        Jan 27, 2017

        Good luck!!!!


      • Deanna  Florio

        Deanna Florio

        Jan 26, 2017


      Great people make things happen

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      Create you own page and donʼt let that cause go unfunded!

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      Kerry Cooke

      Kerry Cooke

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