22%
£3,412raised of £15,000 target by 113 supporters

Weʼre raising £15,000 to Help fund Alfie, who has severe epilepsy, to travel abroad to access medical cannabis which is currently unavailable in the UK legally.

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 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

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Updates

3

  • Hannah deacona month ago
    Hannah deacon

    Hannah deacon

    a month 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 deacon2 months ago
    Hannah deacon

    Hannah deacon

    2 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 deacon4 months ago
    Hannah deacon

    Hannah deacon

    4 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

    Share this update to help us raise more

5 months ago

Hannah deacon started crowdfunding

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Supporters

113

  • k taylor

    k taylor

    Oct 1, 2017

    £10.00

  • Annamarie Breslin

    Annamarie Breslin

    Sep 23, 2017

    £10.00

  • Anonymous

    Anonymous

    Sep 21, 2017

    Simply backwards and pathetic that you have to move abroad to get the necessary treatment for Alfie.We'll look back on this evil law in a generation and wonder how on earth it was allowed to prevail.

    £10.00

  • jenny Critchlow

    jenny Critchlow

    Sep 21, 2017

    £30.00

  • Eta Dread

    Eta Dread

    Sep 18, 2017

    Keep strong your amazing !!All good things will come JAH love ❤️💛💚

  • Dawn Hardwick

    Dawn Hardwick

    Sep 18, 2017

    You are absolutely doing the right thing and Holland is a fantastic country I lived there on and off for 25 years. I love what they stand for. I wish u and your family all the best x

  • Martina Cronin

    Martina Cronin

    Sep 18, 2017

    Hope he gets well xx

    £5.00

Hannah deacon

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About the fundraiser
Hannah deacon

Hannah deacon

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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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