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When Billy Caldwell was a baby he was not expected to survive infancy. A severe form of epilepsy condemned his tiny body to daily seizures – brutal, draining and each one potentially fatal. “They couldn’t get the seizures under control,” his mother, Charlotte, recalled. “Billy was sent home to die – we were told he wouldn’t see past his first birthday.”
That prediction was in 2005. Last month Billy, who is autistic, celebrated his 21st birthday at home in a bucolic corner of Northern Ireland with family, friends, cake and a wide smile.
He is alive and free of seizures, and is something of a celebrity: the boy who helped to legalise cannabis-based medicine in the UK. The Caldwell family achieved a political and medical milestone in 2018 that facilitated his survival and enabled cannabis-based treatments for other patients.
“It was something I didn’t even dare dream about,” Charlotte said this week from the family home in Castlederg, County Tyrone. “It’s beyond words that Billy has reached 21. He’s not just surviving, he’s thriving.”
Billy is able to walk and relishes trips to the sea, she said. “His balance has become really good; he can go up and down steps for the first time. And he loves the beach, even in winter.”
It is an upbeat outcome to a story that for many years was marked by anguish.
Billy survived infancy and made it into boyhood with a cocktail of drugs but the disease still raged inside his body, at times inflicting hundreds of seizures per day, said Charlotte. “He was completely depleted. He was being tube fed. He couldn’t stand up.”
When the cocktail stopped working Charlotte took her son in 2010 to a specialist in Chicago who tweaked and refined treatment, including a change to his diet, which helped to control the seizures.
Then in June 2016, when Billy was almost 11, the seizures returned “with a vengeance”, prompting the family to return to the specialist, who had relocated to Los Angeles. After diagnostic tests, he referred Billy to a medical cannabis expert.
After treatment with cannabidiol (CBD), a chemical produced by the cannabis plant that does not get you high, Billy’s symptoms eased.
The Caldwells returned in 2017 to Northern Ireland, where a family GP prescribed further doses until May 2018 when the NHS told him to stop. Under UK law, a prescription for cannabis-based treatment needed to be based on clinical trials.
With Billy’s medicine running out, the Caldwells flew to Toronto, Canada, where a paediatric neurologist who was running clinical trials prescribed CBD for Billy. When the family returned to the UK, customs officials at Heathrow airport confiscated the medicine.
“That was on the Monday; by Wednesday Billy had his first seizure,” said Charlotte. “On Friday morning he had a prolonged seizure and was blue-lighted to Chelsea children’s hospital in an ambulance. They treated him with hands tied behind their back because Billy’s medicine was in the vaults of the Home Office two-and-a-half miles down the road.”
Amid a public outcry the Conservative government granted the family a licence for cannabis oil to treat Billy. Weeks later the government accepted evidence of therapeutic benefit for some conditions and announced a relaxation of laws governing access to cannabis-derived medicine.
Billy, the symbol of the breakthrough, returned home to Northern Ireland and received treatment on the NHS, for which the family is grateful.
The seizures abated and disappeared, said Charlotte, except for a week in 2023 during a temporary supply glitch. Billy has had no seizures since. “Prescription cannabis has not only given me back my right as a mummy to hope, but more importantly has given Billy his right back to life,” said Charlotte.
However, NHS prescriptions are severely restricted, forcing many patients into a private system that is expensive and inconsistent, said Charlotte. She has founded an advocacy group, Transparent Responsible Adult-Use Controlled Data (TRACD), to lobby for change.
Charlotte remains grateful for what she has. “Billy is still here, he’s still alive. That’s my drive. I couldn’t wish for anything better. I’m just happy.”
