For six-year-old Alfie Dingley, few things make his rare form of childhood epilepsy any better. And one of them—cannabis—simply isn’t legal. His family has tried repeatedly for medical exemptions, but with no luck.
For Alfie, up to 30 seizures in a day is not uncommon, and his epileptic episodes have at times been so bad that he once had 48 hospital visits (and 3,000 seizures) in the space of a single year.
And Alfie has seen improvements using cannabis-based medication previously. For instance, when he traveled to the Netherlands last September and was given a prescription there, his seizures were reduced drastically.
His parents estimate he might have as few as 20 seizures a year if he were able to consistently take the Dutch cannabis medication he was prescribed then. The home office in his native UK, however, continues to deny the family’s request for a medical exemption.
As they say, cannabis medications
“cannot be practically prescribed, administered or supplied to the public.”
As Alfie’s mother told the BBC, however,
“You’ve got to fight for your kids, I want to know that I’ve done everything I can…It’s very rare and very aggressive, there are only nine boys in the world with Alfie’s condition.”
She added that while on the Dutch medication, he once went 24 days without a single epileptic seizure.
She went on,
“We never imagined how well it would work. He’s just a six-year-old boy, he deserves a happy life. We’ve found something that makes him happy and now we’ve got to take that away.”
His dosage of the Dutch medication was small, requiring only three drops of cannabis oil at a time. In contrast, his current steroid dosage may lead to organ failure or worse, and quite frankly, isn’t working.
Alfie’s parents are currently fundraising in the hope that they’ll be able to get him the treatment he needs overseas, because while the treatment in the Netherlands worked well, they don’t have medical insurance in that country.
As they noted in a statement,
“We are now campaigning for him to have a chance to use medical cannabis in his own country along with all other children with epilepsy that is unresponsive to pharmaceutical drugs.”
“We are also fundraising to enable us to take Alfie abroad to give him the treatment we believe will help him as it is currently still illegal in this country. We feel unable to wait until the law is changed in the UK…We want our baby back, we want to give Alfie the chance of a happy life which he massively deserves. He’s been through more than most go through in a lifetime. He deserves to have a wonderful life full of joy, not the pain he currently faces.”
It’s believed that Alfie is the only boy in Britain with his rare form of epilepsy, PCDH19.
h/t: The Independent