MPs call for six-year-old to be allowed life-saving cannabis treatment

MPs have called on the Home Secretary to issue a medical cannabis licence to a six-year-old boy whose rare form of epilepsy improves after taking the drug.

Alfie Dingley has a rare form of childhood epilepsy (PCDH19) which triggers multiple serious seizures - at one point he had 3,000 seizures and 48 hospital visits in a year.

Last September, Alfie went to the Netherlands to take a cannabis-based medication prescribed by a paediatric neurologist, and saw his seizures reduce in number, duration and severity.

Members of the all-party parliamentary group (APPG) on drug policy reform have now called on the Home Office to issue a licence for Alfie to continue taking the medication, which he is currently not permitted to have in the UK.

Alfie going off to school in his purple t shirt to raise awareness of epilepsy.We never knew about epilepsy until the...

Posted by Alfie's Hope on Monday, March 27, 2017

Grandmother Maggie said: "Alfie has gone from a death sentence to the prospect of a more normal life with school, friends and fun, in his own familiar home.

"We want the people who have the power to give him this gift to put themselves in the position of Alfie's family, to think creatively and with open minds and to find a way forward.

"Above all we want compassion to find a way round inflexible rules."

With the Dutch cannabis medicines, it is expected that Alfie would have around 20 seizures a year.

He stayed with his parents in a holiday camp in the Netherlands to receive the life-saving treatment, but without medical insurance in the country they had to return home.

Alfie suffers from a rare form of epilepsy (Alfie's Hope/Facebook/PA)

Alfie's seizures, which can number up to 20 or 30 a day, can gradually be controlled in UK hospitals, but over time it is likely he would be institutionalised with psychosis and die prematurely.

Crispin Blunt, co-chair of the APPG, said: "It would be heartless and cruel not to allow Alfie to access the medication he needs to make his life as seizure-free as possible and to keep him out of hospital.

"Parliament really must look at reforming our laws to allow access to cannabis for medical purposes, which has huge public support.

"Right now, however, the Home Secretary can grant a special licence for Alfie to get the drug he needs."

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