An 11-year-old boy from Castlederg, Northern Ireland, could avoid brain surgery that would put paid to his memories and speech if he instead used cannabis, according to his ma. Billy Caldwell is afflicted by intractable and status epilepsy, which is incurable and causes him to have seizures every day, turning him blue and requiring medication and use of an oxygen mask.
A single seizure could be lethal. It was not believed that Billy would see his first birthday. Seizures occur as Billy sleeps, so of a morning, his mother, Charlotte, does not set out her son’s clothes or make him breakfast – she checks that he is still alive.
For four months, Billy has been in Los Angeles with his mother, where he has been given the cannabinoids cannabidiol and tetrahydrocannabinol (THC). THC is not illegal in California but is in Northern Ireland. Billy hasn’t had a seizure for 21 days, where previously there would be what Charlotte terms “a visit from Mr Seizure” seven to nine times a week. As Charlotte puts it, “Billy isn’t sitting smoking joints, obviously. He gets daily syringes of the oil into his mouth – and the results speak for themselves.”
It was like meeting him for the first time
Charlotte commented that her son’s condition is now so different it has been like meeting him for the first time: “I’ve been Billy’s mum for 11 years and I don’t think I ever met my son – I think I’m only starting to meet him now. He’s more focused, taking more interest in his wee books and has better balance. It’s like a new son has been born.”
Billy’s condition is the result of a lesion on his brain. Initially, doctors believed his frontal left temporal lobe would have to be removed, robbing Billy of memory and speech. Using cannabis for two years could shrink the lesion, necessitating much less drastic brain surgery, but treatment would cost £300,000, of which his family has so far only been able to raise £120,000. £15,000 of this was gained by Billy’s 32-year-old brother, Kyle, who ran 300 miles around Northern Ireland carrying the weight of his brother. Kyle commented, “I don’t think this family can take much more, to be honest.”
A ?cannabis refugee?
Charlotte now describes Billy as “a cannabis refugee” – she would be arrested if she continued to give him THC following brain surgery. She will be taking part in a seminar on medical cannabis at Stormont on January 30 to educate lawmakers and the public. Medical experts and families who have benefited will make presentations. A spokeswoman for the Department of Health stated that the body was “sympathetic to the situation,” but the Misuse of Drugs Act was not dealt with by the Northern Irish assembly.
What you can do
A campaign by the name of Keep Billy Alive has been instituted. Here you can sign a petition in favour of Billy’s Law, legalising cannabis for medical purposes and averting the need for Billy to have such crippling brain surgery. The Irish Republic is already en route to doing so.