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Hannah deacon raised £8,502 from 283 supporters

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Closed 27/06/2018

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£8,502raised of £15,000 target by 283 supporters

    Weʼve raised £8,502 to Help fund Alfie, who has severe epilepsy, to access medical cannabis

    Kenilworth, United Kingdom
    Funded on Wednesday, 27th June 2018

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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 have now taken Alfie to the Netherlands where he started whole plant medical cannabis and the result has been a miracle. He has gone from having over 300 seizures a month to one or two. Hes gone from needing up to 20 doses of steriods a month to one dose of steroids. We are now desperately asking the Home Secretary to issue Alfie with a license to carry on using the whole plant medicine he was using in the Netherlands under prescription from the NHS. Until this is possible we will have to fund the whole plant cbd oil ourselves (thc is illegal so he cannot take this until he has a license). It is hugely expensive and we therefore we still need your support.

    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

    3

    • Hannah deacon1 year ago
      Hannah deacon

      Hannah deacon

      1 year ago

      Thank you so much to everyone who has donated after seeing our story on the BBC we are so grateful. Please share our story. If this medicine works for our little boy we'll need so much support to get us home where we belong. Lots of love xxx

      Share this update to help us raise more

    • Hannah deacon1 year ago
      Hannah deacon

      Hannah deacon

      1 year ago

      Hello to everyone who has kindly donated recently. We are now making plans to go to Holland, hopefully we'll be there in the next few weeks. With your help we will hopefully help Alfie to enjoy a much better sort of life. Thank you for all your support. Please share this page with your friends and tell Alfie's story. We need all the help we can get. Thank you so much. Hannah, Drew, Alfie and Annie xxx

      Share this update to help us raise more

    • Hannah deacon1 year ago
      Hannah deacon

      Hannah deacon

      1 year ago

      Thank you to everyone who has sponsored Cheryl and donated to Alfie's Hope. We really appreciate all your support. Please follow Alfie's journey on Facebook @ Alfie's Hope. Much love xxx

      Share this update to help us raise more

    1 year ago

    Hannah deacon started crowdfunding

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    Page last updated on: 6/19/2018 7:49 AM

    Supporters

    283

    • Anonymous

      Anonymous

      Jun 19, 2018

      Just saw your interview on BBC Breakfast. Can’t imagine how difficult life is for all of you. Very unfair that the Government are being so slow with your case. Fingers crossed you now get your licence

      £30.00

    • Anonymous

      Anonymous

      Jun 1, 2018

      Good luck and God bless!

      £20.00

    • Anonymous

      Anonymous

      May 14, 2018

    • Pete, Katey, Ernie & Freda

      Pete, Katey, Ernie & Freda

      May 9, 2018

      Snowdon - Darren Harvey. Well done Darren ⛰🏅🍺🤗

      £5.00

    • Matt White

      Matt White

      May 2, 2018

      Money for the Tee Shirt

      £10.00

    • Anonymous

      Anonymous

      May 2, 2018

      £20.00

    • Liz Irvine

      Liz Irvine

      Apr 30, 2018

      Hi Hannah ; this is for sponsorship for Abi : I would love to give more but unable to. Hope you get your target . Lots of love Lizzie xxx

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    About Crowdfunding
    About the fundraiser
    Hannah deacon

    Hannah deacon

    Kenilworth, United Kingdom

    Mummy to Alfie and Annie and partner to Drew. Were raising awareness of the need for many with epilepsy to have the right to use medical cannabis in the UK legally.

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