44%
£6,725raised of £15,000 target by 210 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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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

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 deacon5 months ago
    Hannah deacon

    Hannah deacon

    5 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

    Share this update to help us raise more

  • Hannah deacon6 months ago
    Hannah deacon

    Hannah deacon

    6 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

    Share this update to help us raise more

  • Hannah deacon8 months ago
    Hannah deacon

    Hannah deacon

    8 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

9 months ago

Hannah deacon started crowdfunding

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Supporters

210

  • Anonymous

    Anonymous

    Feb 20, 2018

    Good Luck and keep strong. I had a son with epilepsy and I understand how hard it is watching your child suffer. I hope the government wakes up to this too.

    £10.00

  • Miriam Austin

    Miriam Austin

    Feb 20, 2018

    Positive thoughts for you all!!

    £10.00

  • Simon Pettifer

    Simon Pettifer

    Feb 20, 2018

    Good luck little man !

    £20.00

  • Tim Kimpton

    Tim Kimpton

    Feb 19, 2018

    Wishing Alfie and you the best

    £30.00

  • Steve Sexty

    Steve Sexty

    Feb 19, 2018

    £10.00

  • Sara Williams

    Sara Williams

    Feb 19, 2018

    Bless you all, I heard you on the radio this morning , good luck and big hugs xx From a Mum who would do anything for her kids

    £30.00

  • Anthony Hills

    Anthony Hills

    Feb 19, 2018

    All the best Alfie. I hope it all works out. Keep fighting.

    £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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