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Ian OConnor raised £295 from 15 supporters

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Closed 13/10/2017

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£295raised of £200 target by 15 supporters

    Weʼve raised £295 to Help to setup a new charity

    Warrington, United Kingdom
    Funded on Friday, 13th October 2017

    What is crowdfunding?

    Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered charity.

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    Story

    Ralph & Claire Casson met and had their beautiful daughter Phoebe later in life. Parenthood was a revelation to them and transformed their lives for the better. She was the absolute centre of their world and grew into a confident, always happy, always had a question or an answer, full of life little girl.

    Sadly their happiness was broken by periods of time in hospital, the first when Phoebe was 17 months old. The doctors spent days throwing everything at her and trying to identify what was wrong and eventually discovered that her ck (creatine kinase) enzyme count was incredibly high at 250000 rather than the norm of around 100. Tests followed her discharge and months later they received a diagnosis, Phoebe had a genetic mutation called LPIN1.

    LPIN1 is a very rare condition and relatively recently discovered (2008) so at that point they didn’t really understand the implications, these only became clearer with further episodes of what actually turned out to be Rhabdomyolysis, melting of the skeletal muscle. Phoebe’s genetic mutation meant she was more vulnerable to simple fevers or fasting. They took extra care but wanted her to have a full, normal life. However her 4th episode of Rhabdomyolysis took a swift and more horrific turn, her potassium levels began to rise uncontrollably and they tragically lost their shining star, their gorgeous girl late in the evening of 17th September 2016. Their world was shattered into 1000 pieces.

    In the days that followed her death, Claire & Ralph’s minds turned to fundraising, bouquet after bouquet of flowers arrived and they thought there had to be a better and more permanent use of the money people were spending. In the first instance they raised money for a roundabout in Phoebe’s memory in her favourite park, which was in place for and opened on what would have been Phoebe’s 5th birthday on 17th December 2016. Phoebe loved this park, she constantly asked her mummy when would there be a new roundabout to replace the old wonky one which had been removed and to see her friends and the children of the local area now enjoying Phoebe’s roundabout but they would like to do more and are in the process of setting up” Phoebe’s Roundabout” as a registered charity.

    A key objective of “Phoebe’s Roundabout” will be to support research into LPIN1 deficiency, the rare condition which took Phoebe’s life so suddenly aged just 4. There is a small team in Paris at the Institut Necker who are researching the condition and hopefully working towards drug trials in the near future but their team is small and stretched. In raising additional funds they could help them further their objectives as well explore other research opportunities and provide support for families of other sufferers in the UK and beyond.

    Please help with helping Claire & Ralph with their efforts to first cover the legal fees they’ve incurred to manage their submission to the Charities Commission and then get “Phoebe’s Roundabout” off to a flying start. They want to be able to do everything they can to prevent any other family losing their precious child to LPIN1.

    Updates

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    Ian OConnor

    Updates appear here

      1 year ago

      Ian OConnor started crowdfunding

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      Page last updated on: 10/2/2017 9:45 AM

      Supporters

      15

      • Anonymous

        Anonymous

        Oct 2, 2017

        Donated on behalf of Samantha Lee and Andrea Morris. Thanks for your donations.

        £30.00

      • Jenny Horton

        Jenny Horton

        Sep 20, 2017

        Well done Ian x

        £10.00

      • Steve Bradshaw

        Steve Bradshaw

        Sep 17, 2017

        An exceptional cause and hopefully the start of something pioneering.

        £50.00

      • Kellie Ashley

        Kellie Ashley

        Sep 17, 2017

        Well done Ian !!!!

        £10.00

      • Alison Howie

        Alison Howie

        Sep 17, 2017

        On behalf of Ben

        £20.00

      • Mairead Douglas

        Mairead Douglas

        Sep 14, 2017

        Good Luck 🍀

        £20.00

      • Alison Howie

        Alison Howie

        Aug 19, 2017

        £20.00

      Great people make things happen

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      About Crowdfunding
      About the fundraiser
      Ian OConnor

      Ian OConnor

      Warrington, United Kingdom

      Hello. My name is Ian O'Connor and I would like to help my good friends Claire and Ralph raise money to set up a charity in the memory of their daughter, Phoebe Casson. I will be running the Warrington Half Marathon on 17th September. Please donate whatever you can. Thank you

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