Billy Caldwell, the 12-year-old boy who had his anti-epileptic medicine confiscated by the Home Office this week, has been admitted to hospital, with his mother saying his condition is life-threatening.
“Billy has had back-to-back seizures today,” Charlotte Caldwell, said on Friday. “On his medication, which included the vital but banned THC component, he was seizure-free for more than 300 days.”
On Friday afternoon, Billy was taken to Chelsea and Westminster hospital in west London in an ambulance after experiencing seizures.
Caldwell said doctors in Canada and Northern Ireland familiar with the case had described her son’s situation as life-threatening. She said the Home Office would be held accountable if her son died.
Billy had been placed on cannabidiol (CBD) oil, along with opiate-based medication, after he was forced to stop taking cannabis oil, but he failed to respond positively to the treatment and his health deteriorated as his seizures gradually resumed.
The family said the 12-year-old can now be treated only with hospital-administered medication.
Speaking from hospital, Caldwell told Sky News: “[Billy’s] out of the seizure but I cannot administer any more rescue medicine for him at home. He’s been admitted and they’re keeping him in hospital simply because Billy’s seizures are life-threatening … one seizure can kill him.”
She added: “I’m just absolutely devastated that we’re back now where we were nearly two years ago before medicinal cannabis … I would appeal to the Home Office if they have any compassion. Please bring the medicine to Billy because this is the only way we’re going to stop his seizures.”
Earlier on Friday, Caldwell criticised the government for effectively forcing them to leave the UK.
“No mother should be made to flee the country to keep their child alive,” she said. The pair have spent about four of the past 12 years abroad because cannabis oil is illegal in the UK.
On Monday they had six months’ worth of anti-epileptic medicine confiscated by customs agents when they arrived at Heathrow from Toronto. Caldwell was invited to meet the Home Office minister Nick Hurd, who told her that it would not be returned, despite her pleas.
“It has to be the most frightening situation that a mother could ever be put in,” Caldwell told the Guardian, describing how she and Billy had been forced to leave their home, friends and family in order to access the potentially life-saving medicine.
“He’s undergone countless administrations of anti-epileptic pharmaceutical drugs which have never worked and have upset his entire system,” Caldwell said. “The side-effects left him so depleted that he couldn’t even lift his head or pick up a toy.”
The anti-epilepsy drugs prescribed by the NHS often cause uncontrollable tremors, hair loss, swollen gums and rashes, among other adverse effects. Feeling that she had no choice but to seek treatment for her child abroad, Caldwell found a doctor in the US in September 2007 who “saved Billy’s life” by weaning him off anti-epileptic pharmaceutical drugs, which she says were aggravating his seizures.
The doctor also placed him on a ketogenic diet – a high-fat, low-carbohydrate food plan – that helped his seizures to rapidly subside.
Eight years later, in June 2016, the seizures returned. They travelled to California again in September that year, until their money ran out eight months later and they came back to their home in Northern Ireland.
In March 2017 they walked 150 miles in eight days, from their home to the hospital, to demonstrate the incredible improvement in Billy’s condition after the cannabis treatment.
A doctor in Northern Ireland prescribed him the oil, since it was clear it was the only effective treatment. This was the first time a child had ever been issued the substance on the NHS.
The oil contained CBD and also THC the psychoactive constituent of cannabis that gets users high. In October 2016, the Medicines and Healthcare Products Regulatory Agency issued an opinion that products containing CBD used for medical purposes are medicine. However, medicines containing the raw form of THC remain illegal.
The government’s current position is that THC has no recognised medicinal or legitimate uses beyond potential research.
Although some children with epilepsy respond positively to CBD, the conditions of others, such as Billy, respond only to THC-derived products. And there is growing evidence of the benefits of prescribing medicinal cannabis.
After about 300 days without a seizure, the Home Office recently ordered the doctor to stop prescribing the oil, prompting Caldwell to seek treatment in Canada, which is preparing to legalise cannabis.
The case has shone a light on a drug policy that critics see as outdated and has provoked widespread demands for urgent reform, as well as calls for an exception to be made for Billy until legislation can be considered.
Caldwell said she doubted whether she or Hurd would be arrested if the minister decided to “do the right thing” and allow Billy to have his anti-epileptic medication.
“Surely common sense should prevail,” she said, pointing to the public support for the legalisation of medical cannabis, and the fact that police in some parts of the country had deprioritised cannabis offences.
“To me, this is not an illegal or controlled substance, this is my little boy’s medicine. Even if you drank six months’ worth of this medicine, you wouldn’t get high because the THC content is so low.”
There are around 63,400 children with epilepsy in the UK and a third of those do not respond to the medication prescribed by the NHS. Some 1,150 people died of epilepsy-related causes in 2009.
Billy, who also has severe autism, cannot talk and requires 24/7 care, enjoys riding his pony Paddy, often goes swimming and attends a special needs school.
Asked how Billy had handled a week of intense media attention, Caldwell said he had been “a wee bit out of sorts” and that “he knows that something is going on”.
On Tuesday morning he had his first seizure in almost a year.
On the same day, a group of pro-reform Tory MPs said that medicinal cannabis could be on sale within a year. But this could be too late for Billy. “The fear that Billy will die without his medication has been my overriding emotion this week,” said Caldwell. “I think that fear is keeping me going.”