19th Nov, 2017

Family moving to Holland to get medical cannabis treatment for severely epileptic son

Ian Hughes 8th Sep, 2017 Updated: 8th Sep, 2017

A MUM is moving her family to Holland so her five year-old son who suffers with severe epilepsy can be legally treated with medical cannabis.

Alfie Dingley, from Kenilworth, has a rare form of epilepsy and has suffered thousands of seizures during his young life. They started when he was just eight months old. He did not respond well to epilepsy medicine and the severe seizures continued, leading to him spending four months at Great Ormond Street Hospital.

After extensive testing and weeks at a time spent in hospital, it was found Alfie had an extremely rare generic disorder called PCDH19. The condition usually only affects girls, and there are only thought to be five boys in the world who suffer from it.

The condition causes catastrophic clusters of seizures which are hard to control and are unresponsive to anti-epilepsy drugs.

His parents are now seeking to treat Alfie in The Hague, using medical cannabis, but they have to move their whole lives there as the treatment is not legal in the UK.

Mum Hannah Deacon said: “We have done a lot of research into whole plant medical cannabis and have found many parents around the world who are using it effectively to either reduce or stop very aggressive seizures.

“However, if we were to give Alfie medical cannabis in the UK, we could be jailed for up to 14 years for supply. This is an absurd situation.”

Speaking of Alfie’s condition, Hannah said: “His life is very different to a well child of his age. I am Alfie’s full-time carer, so I cannot work despite previously having a career in the travel industry, and am not entitled to any other support, which is very difficult.

“Alfie is deeply affected by the drugs he is given. The steroids have serious side effects, are toxic, and cause him to be very aggressive. His condition means he misses 75 per cent of his schooling, and that he does not get to socialise, as well as having learning difficulties.

Hannah, with her partner, Alfie and three year-old daughter Annie are moving to Holland next week so Alfie can be legally treated. They have sourced a doctor and pharmacy, contacted and briefed a children’s department at a hospital’s A&E, and paid for two months of accommodation.

Hannah added: “It’s been very traumatic couple of years for us as a family. We are having to move to a new country to get treatment which could transform Alfie’s life. Having said that, we are willing to do absolutely anything it takes for him to be well.”

There is support at the highest level to reclassify cannabis – currently considered a Schedule 1 drug, along with powerful hallucinogenic drugs such as LSD and mescaline.

Baroness Meacher led a debate in the House of Lords yesterday (September 7) calling on the Government to change the classification of the drug.

In her speech, she said: “Under our drug schedules, cannabis is a dangerous drug with no medicinal value. In reality cannabis is, of course, safer than many prescribed medications and there is a growing body of evidence of its medicinal value for a remarkable list of conditions. Our schedule is simply wrong.”

“Chronically sick patients with constant severe pain and other symptoms have suffered far too long, reliant upon prescribed medications, sometimes ineffective and with intolerable side effects for many.”

Hannah has been following the debate closely, but for now is focusing on getting Alfie treated in Holland, and has launched a JustGiving crowdfunding page to help raise funds.

Hannah said: “We have to take Alfie abroad so we can try this life saving medicine, in the hope that it gives him the chance of a normal and happy life.”

At the time of writing the JustGiving page had reached £1,517 of its £15,000 target. Visit www.justgiving.com/crowdfunding/AlfiesHope1

to support the appeal.

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Education Matters Part 4