Billy Caldwell, the Northern Ireland man whose battle with severe epilepsy helped reshape UK policy on cannabis-based medicine, has celebrated his 21st birthday — a milestone his family once believed they would never see.
As a baby in 2005, Billy was sent home to die, his mother Charlotte recalled. Doctors could not control the seizures caused by his severe form of epilepsy and told the family he would not survive his first year. Last month, however, Billy — who is also autistic — marked his 21st birthday at the family home in Castlederg, County Tyrone, surrounded by relatives and friends, cake and a broad smile. He is now seizure-free.
‘It was something I didn’t even dare dream about,’ Charlotte said. ‘It’s beyond words that Billy has reached 21. He’s not just surviving, he’s thriving.’ She said her son can now walk and enjoys trips to the seaside, with improved balance allowing him to climb steps for the first time.
Billy’s path was not easy. For years his condition persisted despite a cocktail of drugs, sometimes triggering hundreds of seizures a day and leaving him tube-fed and unable to stand. In 2010, the family travelled to a specialist in Chicago who refined his treatment, including dietary changes. When seizures returned aggressively in June 2016, the specialist — now based in Los Angeles — referred Billy to a medical cannabis expert. Treatment with CBD, a non-psychoactive compound from the cannabis plant, eased his symptoms.
After returning home in 2017, a GP continued the prescriptions until the NHS stopped them in May 2018, citing the need for clinical trials. The Caldwells flew to Toronto, where a paediatric neurologist prescribed CBD, but on their return Heathrow customs officers confiscated the medicine. Within days Billy had seizures, and after a prolonged episode he was taken by ambulance to a London children’s hospital while his medicine sat in Home Office vaults.
Public pressure led the then-government to grant the family a licence for cannabis oil, and weeks later it announced a relaxation of rules on cannabis-derived medicines. Billy returned to Northern Ireland and now receives treatment on the NHS. Apart from a week in 2023 during a temporary supply disruption, he has had no seizures since.
Charlotte, who has since founded the advocacy group TRACD to lobby for wider access, said 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.’ She noted that NHS prescriptions remain severely restricted, forcing many patients into costly and inconsistent private care, but added: ‘Billy is still here, he’s still alive. That’s my drive. I couldn’t wish for anything better. I’m just happy.’