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Hannah deacon raised £7,987 from 145 supporters

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Closed 18/05/2017

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£7,987
raised of £25,000 target by 145 supporters

    Weʼve raised £7,987 to Help fund Alfie, who has severe epilepsy, to travel abroad to access whole plant medical cannabis which is currently unavailable in the UK

    Kenilworth, United Kingdom
    Funded on Thursday, 18th May 2017

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    Story

    Alfie has a rare condition called PCDH19, which is a genetic disorder. It causes catastrophic clusters of seizures which are hard to control and are unresponsive to anti epilepsy drugs. His condition is not well understood and there is currently no research into medication for this condition other than that which is funded by the PCDH19 Alliance based in America.

    When Alfie has a cluster of seizures currently he has to have an IV of steriods which can be up to 1000mgs three to five times depending on how bad his cluster is. Steriods are toxic and if used a lot can cause serious side effects. Alfie is currently having seizures on average every 7 days so he is receiving a lot of steriods.

    We have done a lot of research into whole plant medical cannabis and have found many parents who are using it effectively to either reduce or stop very agressive seizures.

    We now have to raise enough money to take Alfie abroad so we can try this life saving medicine with him, in the hope that it gives him the chance of a normal and happy life.

    Any money raised which is not used to support his and his family's travel and living expenses abroad will be used to enhance his life experience. We have set up a 'charity' bank account which will have four signatories, three of whom are independent from the family. Any money spent will have to have two signatories to sign it off.

    Many thanks Alfie and his family xxx

    Updates

    4

    • Hannah deacon7 years ago
      Hannah deacon

      Hannah deacon

      7 years ago

      Thank you all so much for your continued support. You are all so generous. We're currently trying to arrange a meeting in Parliament in London to talk about legislation for medical cannabis. Please like our Facebook page 'Alfie's Hope' and all updates will be there. We've also just added a section about the crowdfunding to our website www.alfieshope.co.uk. Thanks again for believing in Alfie and helping us to give him a happy life. Much love xxxxx

      Update from the Page owner

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    • Hannah deacon7 years ago
      Hannah deacon

      Hannah deacon

      7 years ago

      Thank you so much for all our kind donations over the last few days. It's so humbling to know we are supported and people believe in what we're trying to do for our son. Thank you so much xxxx

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    • Hannah deacon7 years ago
      Hannah deacon

      Hannah deacon

      7 years ago

      Thank you so much for all our donations you're all so kind. We're still doing a lot research into hospitals who will take Alfie we've done lots of emails and waiting for replies. Thank you so much for helping us to make it happen. Xxx

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    7 years ago

    Hannah deacon started crowdfunding

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    Page last updated on: 5/18/2017 12.24

    Supporters

    145

    • Anonymous

      Anonymous

      May 18, 2017

      From the Stow Quizzers with another win at The Talbot. Best wishes x

      £31.00

    • Anonymous

      Anonymous

      May 12, 2017

    • Simon Clarke

      Simon Clarke

      May 2, 2017

      All our best from the Stow Quizzers with a win at The Talbot. Xx

      £41.00

    • Simon Clarke

      Simon Clarke

      May 2, 2017

      All our best wishes to you all from the stow Quizzers with another win at The Talbot . Xx

      £41.00

    • D Poole

      D Poole

      Apr 30, 2017

      Wishing you all lots of luck in raising this important fund xx

      £15.00

    • Anna Moulton

      Anna Moulton

      Apr 28, 2017

      Hoping you get your wish for Alfie. Xx

      £20.00

    • Anonymous

      Anonymous

      Apr 28, 2017

      Dear Hannah and Drew. We admire everything you and the family are doing for Alfie. Keep strong! Love Rachel & Nigel

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    About the fundraiser
    Hannah deacon

    Hannah deacon

    Kenilworth, United Kingdom

    Im a desperate Mummy who can not watch her son go through the pain of seizures and hospital admissions any longer. I believe whole plant medical cannabis could be literally a life saver for my son and I will campaign until it is made accessible to me and many other parents.

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