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Catherine Sweet raised £250 from 12 supporters

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Closed 14/09/2017

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£250raised of £500 target by 12 supporters

    Weʼve raised £250 to help fund assesments an ongoing therapy for Louisa, Max & Harry, that aren't currently NHS available or specialised enough for their needs

    Bristol, United Kingdom
    Funded on Thursday, 14th September 2017

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    Story

    In April this year our world was turned upside down when they diagnosed our daughter Louisa, 13 with a life limiting rare progressive neuro muscular condition called Friedrich's Ataxia. It is where the nerves don't receive signals from the brain. It causes poor balance and coordination, loss of use of legs resulting in being fulltime wheelchair user, most commonly by late teens. Loss of fine motor skills, dysarythria (inability to speak properly), spinal curves and most seriously hypertrophic cardiomyopathy. Then in May this year they diagnosed Max, 10 with the same debilitating condition which was shortly followed by the diagnosis of hypertrophic cardiomyopathy, meaning his heart is too big and doesn't best properly. Harry is next to be tested and he currently has sensory processing disorder, Hypermobility Syndrome and hypotonia meaning his body muscles don't work properly resulting in them working too hard causing pain and fatigue. Both Louisa and Max have reduced feeling in their feet and lower legs already. This is genetic, Chris and I both carry it and had no idea. The chance of one of our children having it they say was 1:4, 2 possibly 3 of our children, not great odds!!! Approx 1 to 2 in 100 thousand people have Friedrich's.
    There is no cure only management to keep them out of a wheelchair and on their feet for longer. The Therapy's they need are either not available on the NHS or not specialised enough. Assesments alone cost in the £hundreds. Please help us to make a start xxx thank you

    Updates

    1

    • Catherine Sweet1 year ago
      Catherine Sweet

      Catherine Sweet

      1 year ago

      Wow, we are nearly half way to our first target, thank you so very much from the bottom of my heart to everyone who has donated or shared. Xx

      Share this update to help us raise more

    1 year ago

    Catherine Sweet started crowdfunding

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    Page last updated on: 6/20/2017 9:23 PM

    Supporters

    12

    • Rory Fitzgerald

      Rory Fitzgerald

      Jun 20, 2017

      £20.00

    • Katie Mercer

      Katie Mercer

      Jun 20, 2017

      I hope you get all the help and support you all deserve and desperately need. Much love from Katie mercer xxx

      £10.00

    • Su Hunt

      Su Hunt

      Jun 20, 2017

      Good luck to you all xxx

      £15.00

    • marianne franks

      marianne franks

      Jun 20, 2017

      👩‍❤️‍💋‍👩

      £50.00

    • Mary Cox

      Mary Cox

      Jun 19, 2017

      Good luck to you all xxx

      £20.00

    • Mike & Laine

      Mike & Laine

      Jun 17, 2017

      Three beautiful kids, you could ever meet xxxx

      £50.00

    • Claire Sweet

      Claire Sweet

      Jun 17, 2017

      Good luck :)

      £10.00

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    About Crowdfunding
    About the fundraiser
    Catherine Sweet

    Catherine Sweet

    Bristol, United Kingdom

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