Cannabis may save son but we can't come home to Castlederg, says mother
A Castlederg boy could be saved from traumatic brain surgery that would take his memories and speech thanks to medicinal cannabis, his mother has said.
Eleven-year-old Billy Caldwell suffers from a life-threatening form of epilepsy that has seen him endure daily seizures that turn him blue and don't stop unless he immediately gets medication and wears an oxygen mask.
For the past four months he's been in Los Angeles with his mother, Charlotte, for specialist treatment.
He has been prescribed medicinal cannabis containing the cannabinoids Cannabidiol (CBD) and tetrahydrocannabinol (THC). THC is illegal in Northern Ireland.
Charlotte said he has now been without a seizure for 21 days and doctors are hopeful it will make his surgery safer.
She said the change in his condition over the last seven weeks has made her feel like she was meeting her son properly 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," she said.
"He's more focused, taking more interest in his wee books and has better balance. It's like a new son has been born."
Charlotte says that after an intense surgical evaluation, doctors discovered a lesion on Billy's brain was causing his symptoms.
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"The surgeons thought first of all they would have to remove the frontal left temporal lobe in his brain where the lesion had manifested.
"If they did that it would mean Billy would sadly lose his memory and speech," she explained. With the use of medicinal cannabis for two years, she said doctors told her it could heal or shrink the lesion, making it possible to remove it without the traumatic side effects. Billy's overall treatment will cost a massive £300,000 - so far the family have managed to raise £51,000.
Billy's older brother Kyle (32) raised £15,000 by running 300 miles around Northern Ireland with the weight of his brother on his back. For Christmas, he came to visit Billy with a Santa sack full of cards and presents.
"Kyle and Billy are very close and they miss each other terribly," said Charlotte. "Billy is now a cannabis refugee -I can't bring him home because I would be arrested." Charlotte has arranged an educational seminar on medicinal cannabis at Stormont on January 30, hoping to convince politicians to support a change in the law.
In December, a spokeswoman for the Department of Health said it was "sympathetic to the situation" but added that the Misuse of Drugs Act was a reserved matter (one not dealt with by the NI Assembly), and the Medicines and Healthcare products Regulatory Agency has the key role in the licensing of any medicinal product.
More information on Billy's fundraising campaign can be found at justgiving.com