Charlotte Caldwell attempted to bring medicinal cannabis oil into the UK for her 12-year-old son Billy, but it was confiscated at Heathrow airport after a flight from Canada.
In a statement, Billy’s family said he is now too ill to travel back to Canada for treatment and the “only effective medication is locked in secure storage in the Home Office in London”.
“The situation is now described by doctors in Canada and Northern Ireland familiar with Billy’s case as being life-threatening,” they said.
Billy, who is also autistic, with pronounced communication difficulties, has suffered a “sudden increase in frequency and intensity of seizures” since the medication was confiscated on Monday, the family said.
His “increasingly concerned” mother took him to St Mary’s Hospital in London on Thursday night, where doctors were “horrified” that he was being deprived of the treatment, their statement added.
Billy had back-to-back seizures on Friday but had been seizure-free for more than 300 days when he was previously given the cannabis oil, according to his family.
Ms Caldwell said: “This is beyond cruelty.
“We’ve now reached the point where Billy is too ill to travel to get his medication, but his medication is stored minutes away from where we’re now living in London.
“Despite the best and honest efforts of the NHS, frontline doctors are fighting Billy’s condition with both hands tied behind their back because the only medication that will be effective is the cannabis oil with CBD and THC.
“Those meds need to be released immediately.”
Billy, from County Tyrone in Northern Ireland, was given a prescription for medicinal cannabis oil last year to help treat his epilepsy – the first time the drug had been prescribed by the NHS.
But the boy’s doctor was told by Home Office drug enforcement teams to stop prescribing the medication, which Ms Caldwell credits with keeping her son’s seizures at bay.
After arriving at Heathrow on Monday, she met Home Office Minister Nick Hurd. She said she asked the MP for the medicines to be returned, but was refused.
“We will not stop, we are not going to give up,” she said after the medicine was seized.
“We have love, hope, faith for our kids and we are going to continue.”