Please save my son Alfie by allowing him to legally use medical cannabis!
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My six year old son Alfie has a very rare genetic epilepsy condition called PCDH19. It causes clusters of seizures which are unresponsive to almost any medications. He can have up to 30 violent seizures a day. It’s so severe that he had 3000 seizures in one year and ended up in hospital 48 times.
The only legal medication in the UK that helps are steroids. But they are toxic to the body, especially when used regularly. If we continue giving them to Alfie there is a high likelihood he will develop psychosis or his organs will fail.
Last year, in desperation, we travelled to Holland where doctors treated him with cannabis oil. Miraculously, with a dose of three drops a day, Alfie didn’t have a seizure for 27 days. He's only had 2 seizures in the last two months.
Dutch doctors say that cannabis oil could get his seizures down from 30 a day to twenty a year. My baby went from a death sentence, to the prospect of a normal life, with school, friends and fun.
But that prospect could be taken away now we are back in the UK because here the use of medical cannabis is illegal. I don’t want to have to break the law so I am pleading with the UK Government to make an exception for Alfie and grant his doctor license to prescribe medical cannabis so Alfie can live life carefree, without constant seizures and ploughing of steroids.
Making an exception for Alfie doesn't have to open the floodgates - Alfie is the only boy in the UK that has this condition.
We are working with End Our Pain (https://endourpain.org/ to get a better life for Alfie and hope this will lead to help for other children who need to try this medication. To legalise the use of medical cannabis would enable the quality and consistency of products to be properly controlled, would create a new industry and more jobs, raise taxes, lower crime rates and result in fewer people struggling in hospitals to be well, or being preyed on by unscrupulous online sellers. We assess the saving to the NHS from Alfie’s case alone to be over £100,000 and up to 150 paediatric bed days. It’s a no-brainer!
Getting Alfie treatment could be the first step to making medical cannabis accessible to others in need. We urgently need the public to make noise to make that happen.
Alfie has been through more than most people go through in a lifetime. He deserves to have a wonderful life full of joy.
I just want Amber Rudd and Jeremy Hunt to understand this isn’t about the wholesale legalisation of Cannabis. This is about weekly trips to A&E, watching my son have seizures, watching him turn purple, and praying that he lives to see another day.
Please sign and share this petition and help me make our family’s only wish come true. And please like our Facebook page Alfie's Hope for all updates on Alfie's journey.
Thank you x
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