A six-year-old Kenilworth boy whose life has been blighted by severe epilepsy has responded brilliantly to medical cannabis treatment in the Netherlands.
But Hannah Deacon, mother of Alfie Dingley, is still battling to make the medical cannabis oil treatment available in the UK, where it is currently illegal.
Alfie and his family, including his father Drew and three-year-old sister Annie, moved to Holland in September for the treatment to begin.
The treatment has had a great effect. The frequency and intensity of Alfie’s seizures, which often come in ‘clusters’, have reduced dramatically since treatment started at the end of September.
Hannah said his improvement was ‘overwhelming’.
She added: “He’s had two small clusters of seizures in 65 days. As far as we’re concerned, that’s a great success.
“We still have a way to go to complete the dosage, so his condition could improve. We’re really pleased.”
Alfie, a pupil at Thorns Community Infant School, has a rare form of epilepsy called PCDH19. He was formally diagnosed with the condition in 2015, when his seizures began to get more intense.
Alfie used to be treated with steroids, but these can produce serious side effects. Prolonged use carries the risk of psychosis.
And previous treatment with steroids did not do much to stop Alfie’s seizures from coming back.
Hannah said: “Over the last two years, he’d have seizures up to six times a month.
“We were pretty much living in Warwick Hospital last year.”
Alfie’s doctor supports the family moving to Holland for the cannabis oil treatment, but he cannot prescribe the medication due to one of the chemicals, THC, being illegal in the UK.
The cost of keeping Alfie in Holland and paying for treatment is around €4,000 a month, and their money is running out.
This has made the UK’s stance on cannabis treatment even more frustrating for Hannah.
She said: “It’s recognised throughout the world as being safe and effective.
“It just seems inhumane, it’s barbaric. This is about Alfie’s human rights. It’s not fair on all of us.
“We’ll still fight the fight to get the NHS to pay. We think it could save the NHS money - Alfie was in hospital every week before. If they made it legal, all that cost would be gone.”
Hannah plans to keep Alfie in Holland until January, when she will assess what to do next. She is also taking legal advice.