Billy Caldwell, the boy whose case led to a change in UK law on medicinal cannabis, has celebrated his 21st birthday and is now seizure-free for three years. His mother, Charlotte, described his recovery as "quite incredible" and said she never thought he would reach this milestone.
A Landmark Case
Billy made headlines in 2018 when UK Border Force confiscated his cannabis oil at Heathrow Airport on their return from Canada. His case sparked a fierce debate about access to the drug for the chronically ill, resulting in the Home Office returning his medicine and legalising it for medical use.
At the age of 12, Billy had been placed on palliative care due to having up to 800 seizures a day. Charlotte took him to Canada, where he was prescribed a medicine that would save his life.
Fighting for Treatment
Back in 2018, Charlotte publicised that she and Billy planned to return to the UK from Toronto carrying the medicine that was illegal here. She said: "I was crying and one of the customs officers who took his cannabis oil was crying. He said 'I'm a father myself but I've got to do my job'."
Billy's epilepsy was so severe that he was being tube-fed and struggled to stand. Charlotte hosted a media briefing in a hotel lobby in central London to tell reporters that he would die if the cannabis oil was not returned to him.
A Transformed Life
Charlotte, from County Tyrone, Northern Ireland, said: "I had been offered palliative care for Billy. He was having between 300 to 800 seizures a day and the doctors told me that was his new baseline and that EEG scans of his brain were 'lighting up like a Christmas tree'."
She added: "He was having seizures every few minutes. I was sent home from hospital with him seizing. I couldn't stomach the thought of palliative care so I took my little boy home to die. While he was asleep I researched anything that could help him and came across medical cannabis."
Charlotte says that while Billy, who has autism, still requires around the clock care, his life has been transformed. She said: "Billy is not just surviving but thriving. All my dreams for Billy are coming true. Prescription cannabis has given him a life."
She continued: "Before he accessed prescription cannabis he was struggling to stay awake, he was so depleted from constant seizures. I would be awake until the sun came up in case I woke up to find my boy cold and blue beside me. He could have died if he had a seizure and I didn't see it."
"Now Billy is running around full of mischief, fun and laughter. He's living his best life and loves horse riding, swimming and reading Harry Potter. I'm so proud of him. He was just a little boy and he took on the British government and won."
Ongoing Access Issues
Charlotte's gamble forced a U-turn out of then-Home Secretary Sajid Javid, who announced that it would be legal for specialist doctors to prescribe cannabis derived medicines in certain circumstances.
However, Charlotte stresses that only a tiny number of similar patients were ever granted NHS prescriptions for medicinal cannabis, as experts still point to a lack of robust clinical trial data - a legacy of the fact such trials were outlawed for so long.
The law change has opened the door for medical firms to sell "whole plant" medicinal cannabis in the UK, but she says many users able to pay the cost of up to £1,000 a month are not those vulnerable and chronically ill, such as Billy.
Charlotte said: "These are people who often can't work because of their illness. They can't afford this. Thousands of people who really need this type of medication still cannot access it."
