Desperate parents leave UK to treat sick son with cannabis
Parents of an epileptic boy who suffers from a severe and rare form of epilepsy which can trigger hundreds of seizures per day will leave the UK so their son can be treated with cannabis.
As one of only five boys in the world with the rare form of epilepsy, Alfie Dingley can be struck down by strings of seizures.
The five-year-old has been dealing with fits in “catastrophic clusters” since he was eight months old.
Parents Hannah Deacon and Drew Dingley discovered he could have the seizures treated with cannabis oil – but that they would be jailed if they administered it in the UK.
The Warwickshire based family has made the tough decision to leave their home to seek treatment for their child.
Mum Hannah told the Guardian her son does not have the same quality of life as others his age.
“Alfie is deeply affected by the drugs he is given. The IV steroids Alfie takes when he has a cluster of seizures have serious side effects. They are toxic and cause him to be very aggressive,” she 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.”
The mum, who used to work in the travel industry, would be jailed for up to 14 years if she illegally administered the treatment.
“This is an absurd situation,” she said.
“We are having to move to a new country to get treatment which could transform Alfie’s life.”
The extremely rare form of epilepsy, PCDH19, usually affects girls and can make life extremely difficult.
“We now have to raise enough money to take Alfie abroad so we can try this life saving medicine with him, in the hope that it gives him the chance of a normal and happy life.”
The family, along with their daughter Annie, 3, will relocate to The Hague, next week, but are forced to fundraise to help with the £15,000 cost.
Alfie’s family are not the only ones to make the case for medicinal cannabis, with one woman, Lynn Cameron, 48, from Blantyre, Scotland claiming her brain tumor was cured by it.
Studies found cannabis compounds may kill certain malignant cells in the lab, yet experts warn there is no definitive proof of its effects on cancer in humans.
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