Alf ie’s f its are back, says mum who fought to give him cannabis
THE mother of a severely epileptic boy whose case helped legalise medicinal cannabis in Britain has spoken of her heartbreak after his fits returned.
Hannah Deacon pleaded for the law to be changed so that she could give little Alfie Dingley the drug in the UK. The eight-year-old then had 11 seizure-free months after being given cannabis oil, she said in an emotive video she posted on Facebook.
But now Miss Deacon, 40, has been left devastated after Alfie’s fits resumed.
She says the youngster has developed a tolerance to the treatment – and now wants a further relaxation of restrictions so that he can be given new products.
In the video she also revealed that Alfie is being given steroids which have made him aggressive.
Miss Deacon said last night: ‘I’ve had 11 months seizure-free with Alfie and I’ve had to come to terms with the fact that he’s not now. It’s heartbreaking.’ The hairdresser, from Kenilworth, Warwickshire, described in the video which she posted last month how the youngster had gone ‘downhill’ and now has clusters of seizures every two weeks. ‘It’s really, really, really hard and really sad,’ she said. Alfie’s rare condition meant he once suffered up to 30 fits a day.
Miss Deacon found that cannabis administered in the Netherlands helped ease the seizures. In the wake of a shift in public opinion partly prompted by Alfie’s case, legal changes late last year allowed UK doctors to prescribe the drug under strict guidelines. In August, however, NHS spending watchdogs blocked funding for routine cannabis- based drugs because there is insufficient evidence they are safe.
Miss Deacon says she still believes in the benefits of the drug. Last night she told The Mail on Sunday: ‘Cannabis medicine is amazing for Alfie and it can be amazing for many people.
‘But it can cause tolerance in the same way antibiotics can. If you take antibiotics you can become tolerant to them.
‘What my son needs is a choice of cannabis oil products to be available.’ Calling new legislation a ‘crazy PR stunt’, she added: ‘The law has changed but not one prescription has been done on the NHS and companies haven’t been able to do any imports.’
Miss Deacon said: ‘What I don’t want is for doctors to turn round and say this treatment doesn’t work. It does work.’