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£7,782raised of £15,000 target by 259 supporters

Weʼre raising £15,000 to Help fund Alfie, who has severe epilepsy, to access medical cannabis

Location
Kenilworth, United Kingdom

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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

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Updates

3

  • Hannah deacon8 months ago
    Hannah deacon

    Hannah deacon

    8 months 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

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  • Hannah deacon8 months ago
    Hannah deacon

    Hannah deacon

    8 months 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

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  • Hannah deacon10 months ago
    Hannah deacon

    Hannah deacon

    10 months 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

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1 year ago

Hannah deacon started crowdfunding

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Page last updated on: 4/23/2018 9:31 AM

Supporters

259

  • Phil Monk

    Phil Monk

    Apr 23, 2018

    You shouldn't have to go through this.

    £5.00

  • Anonymous

    Anonymous

    Apr 10, 2018

    Hoping Alfie makes a full recovery and gets the treatment he needs.

  • Robert Robson

    Robert Robson

    Apr 8, 2018

    These are the proceeds from a gig we played at the Zephyr Lounge. We are a Leamington ‘dad’ band, called Charlie and the Milvertones, and our guitarist (Charlie) nominated you.

    £125.00

  • Linda Masson

    Linda Masson

    Mar 23, 2018

    With four healthy grandchildren I just cannot imagine how I would cope with Alfie’s condition.

    £10.00

  • Joanne Griffin

    Joanne Griffin

    Mar 21, 2018

    Dig in and keep fighting!

  • Stacy clark

    Stacy clark

    Mar 20, 2018

  • Anonymous

    Anonymous

    Mar 20, 2018

    You shouldn't have to do this - but the very best of luck to you and your family

    £20.00

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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