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Jodieanne Winter raised £2,680 from 122 supporters.


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Closed 15/06/2017



£2,680raised of £25,000 target by 122 supporters

    Weʼve raised £2,680 to Prevent Child Suicide Lilly-Anna's Trust

    Leicester, United Kingdom
    Funded on Thursday, 15th June 2017

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    On Thursday the 11th of May 2017 our precious child Lilly-Anna chose to leave this word. She was 13 years old. She was a gifted musician, equestrian and twice a Scholar. She was the most polite, considerate and undemanding child you could meet. She carried her suffering with unrivalled grace and dignity to the end.

    Lilly's pain started when she was nine years old and she was finally recognised as having Ehlers-Danlos Syndrome five years later... only 5 weeks before she left us. EDS is an invisible illness that affects the collagen gene... There Is No Cure. Pain clinics, physio and often surgery are vital in management of symptoms. Medical professionals didn't have the awareness to make the links in her symptoms and diagnose her syndrome earlier. People couldn't see a reason for her pain. She didn't want to be perceived as weak or attention seeking so very quickly stopped talking about her pain. As with so many EDS warriors, the decision to internalise her suffering was the beginning of her mental health difficulties. By 13 years old, Lilly-Anna was finding it impossible to cope. Her visible symptoms had rapidly increased. Her EDS was finally recognised by a consultant and after a long battle she was admitted to the CAMHS in-patient ward.. Had this come sooner it might have been enough to make a difference?

    It was too late.

    As a family fighting for answers and support, we had two battle fronts.
    1) Get EDS diagnosis and treatment.
    2) Get psychiatric help from camhs.

    The EDS services would tell us that they couldn't advise on mental health and vice verce. But by this point the two were intrinsically linked.

    Our goal is to establish a charity with the support of the Ehlers-Danlos society that targets all children at the point of diagnosis and ensures they recieve the appropriate mental health support to prevent another child facing the same decision Lilly did.

    Please help us to make this Lilly-Anna's Legacy.




    Jodieanne Winter

    Updates appear here

      1 year ago

      Jodieanne Winter started crowdfunding

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      Page last updated on: 6/15/2017 10:23 PM



      • Anonymous


        Jun 15, 2017

      • Anonymous


        Jun 14, 2017

      • Gregory Heath

        Gregory Heath

        Jun 14, 2017


      • Josephine Wise

        Josephine Wise

        Jun 11, 2017

        Done Jodie happy birthday xxx

      • Jenna Crowley

        Jenna Crowley

        Jun 10, 2017

        The story of your daughter touched me deeply. I am diagnosed with multiple conditions, Chiari Malformation & Joint Hypermobility Syndrome are just two of them. It took over 20 years... prayers to all


      • Richard Allen

        Richard Allen

        Jun 10, 2017

        From Richard, Claire & Choccy H.


      • Writing For Ryan

        Writing For Ryan

        Jun 10, 2017

        You are doing an amazing job. The team at Writing for Ryan supports you and your work.

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      About Crowdfunding
      About the fundraiser
      Jodieanne Winter

      Jodieanne Winter

      Leicester, United Kingdom

      My name is Jodieanne. I am the proud mother of Lilly-Anna Montandon. Lilly-Anna took her own life two weeks ago because of her constant battle with Ehlers Danlos Syndrome. Please help us x

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