Mum of epilepsy teen Billy in High Court bid over medicinal cannabis
Charlotte Caldwell will return to the High Court this week in her bid to force NHS doctors to prescribe her son the medication she says is keeping him alive.
The Belfast Trust is expected to appear on Friday to explain why it has not provided an NHS prescription for medicinal cannabis to keep Billy Caldwell's potentially deadly seizures at bay.
Ms Caldwell has described the legal battle as the cruellest ordeal she has faced in her desperate attempts to keep Billy (13) alive. The pair have spent months at a time living in Canada and the US seeking treatment for the youngster's intractable epilepsy, even spending a period living rough in Los Angeles.
Speaking ahead of this week's High Court hearing, Charlotte said: "Billy has had a number of consultations with the world-ranking paediatric neurologist Professor Helen Cross at Great Ormond Street Hospital in London.
"He was admitted to the hospital and underwent a number of detailed diagnostic tests and Professor Cross has sent a number of detailed reports to Billy's doctors in Belfast.
"All of these state categorically that Billy's medicinal cannabis must not be stopped, and she has also acknowledged how Billy has benefited from this treatment over the last three years.
"Despite this, Belfast continues to refuse to prescribe Billy's medicinal cannabis."
She continued: "A High Court hearing is a road we did not want to go down. I can honestly say the last number of months have been what I can only describe as an incredibly cruel experience, filled with pressure, worries, heartbreak and tears.
"Our lives have been turned inside out, upside down, left to right and back to front and I feel like Billy has been abandoned.
"We're living under what is almost like a death sentence. Billy and I are made to stand on the very edge of a cliff and the powers above have informed us that the rock we are standing on is going to fall, but we don't know when."
The teenager, from Castlederg, Co Tyrone, was born with a rare form of epilepsy. His seizures are so severe that any one of them could kill him.
He was sent home to die by doctors in Belfast when he was just a baby, but Ms Caldwell would not accept the prognosis, sparking a 13-year crusade to get her son the treatment he needs.
In February last year he returned to the UK after medics pledged to give him the cannabis oil he needs. However, Billy has not yet received a prescription from doctors in Belfast and it is understood this is due to the fact the medication is unregulated. Instead, Ms Caldwell has been relying on the generosity of a drugs company to supply the drug.
A Belfast Trust spokesman said: "Due to an ongoing legal process, it would be inappropriate for Belfast trust to comment at this time."