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Hannah deacon raised £7,987 from 145 supporters
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Closed 18/05/2017
Iʼve 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
- 8 years ago
Hannah deacon
8 years agoThank 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
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- 8 years ago
Hannah deacon
8 years agoThank 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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- 8 years ago
Hannah deacon
8 years agoThank 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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Hannah deacon started crowdfunding
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Supporters
145
Anonymous
May 18, 2017
From the Stow Quizzers with another win at The Talbot. Best wishes x
£31.00
Anonymous
May 12, 2017
Simon Clarke
May 2, 2017
All our best from the Stow Quizzers with a win at The Talbot. Xx
£41.00
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
Apr 30, 2017
Wishing you all lots of luck in raising this important fund xx
£15.00
Anna Moulton
Apr 28, 2017
Hoping you get your wish for Alfie. Xx
£20.00
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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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.