Billy Caldwell was sent home from hospital as a baby to die. Doctors told his mother he would not see his first birthday. That was in 2005. In July 2026 he marked his 21st at the family home in Castlederg, County Tyrone, and he has now gone three years without a seizure.
Caldwell has a severe form of epilepsy and is autistic. At its worst the illness brought between 300 and 800 life-threatening seizures a day, the Ulster Herald reports. His case became the trigger for a change in British drug law.
The search for treatment took the family repeatedly across the Atlantic. The Ulster Herald raised about £250,000 in 2007 for specialist care in Chicago. There the epilepsy specialist Douglas Nordli cut back Billy's mix of anti-epileptic drugs and added a ketogenic diet, physiotherapy and speech therapy. The Guardian dates the Chicago treatment to 2010. Either way, the seizures eased for several years.
They returned in 2016. The specialist, by then working in Los Angeles, referred Billy to a doctor using cannabis-based medicine. Treatment with cannabidiol, a cannabis compound that does not make the patient high, brought the seizures back under control.
A confiscation that changed the law
In 2017 Billy became the first person in the United Kingdom to receive an NHS prescription for medicinal cannabis, according to the Ulster Herald. A family doctor kept up the prescription until May 2018, when the NHS ordered him to stop, the Guardian reports. British law then required such prescriptions to rest on clinical trials. The family flew to Toronto for a supply, and customs officers seized the medicine at Heathrow airport. Billy had a seizure two days later and a prolonged one two days after that.
Amid public pressure the government issued an emergency licence. Weeks later it accepted the evidence of therapeutic benefit and allowed specialist doctors to prescribe cannabis-based medicine. The case of another child, Alfie Dingley, pushed in the same direction, the Ulster Herald notes.
"We never thought Billy would be 21 and three years without a seizure," his mother Charlotte Caldwell told the paper. Her son can now walk up and down steps for the first time, loves the beach and is learning to wakeboard.
The access problem she describes has not gone away. NHS prescriptions remain tightly restricted, which pushes many families into an expensive private market. Charlotte Caldwell has founded an advocacy group, Transparent Responsible Adult-Use Controlled Data, to press for wider access.