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Epilepsy patient Billy Caldwell is fighting for his life following a series of extreme seizures while his cannabis medication sits on a desk in the Home Office in London.

Paramedics rushed the youngster to Chelsea and Westminster Hospital after rescue medications failed to bring him out of a massive intractable epileptic seizure.

The 12-year-old from Co Tyrone had been admitted to St Mary's Hospital, Paddington, for seven hours from Thursday night into the early hours of Friday morning.

But this afternoon he drifted from a deep sleep into a series of increasingly deeper and potentially deadly seizures.

Then shortly after lunchtime he was hit with a massive fit leaving rescue medication useless.

The medicinal cannabis oil he had been taking to prevent seizures, was just 3.2 miles away in an office in Marsham Street, London, inside the Home Office.

His mum Charlotte told Belfast Live: “I need people to know my son is dying. They are letting him die. The only thing that can save him, his anti-epileptic medication, is sitting on a desk in the Home Office out of our reach. I’d ask Nick Hurd [Home Office Minister] to bring it to me now.

"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.

"If Billy dies, which is looking increasingly possible, then the Home Office, and Nick Hurd, will be held completely accountable."

Outlawed in the UK, the oil had been seized by Customs officers in Heathrow Airport days earlier.

A friend who was with his mum Charlotte at the time of his latest seizure, said: “He’s on his way right now to Chelsea and Westminster Hospital. He is in a very bad way and we all know this could be the end.

“The situation created by Nick Hurd’s confiscation order is dire.

“The seizures that had been at bay for more than 300 days reappeared hours after Billy’s medication was stopped on Monday.

"He suffered a series of minute-long seizures by the early hours of Friday morning was treated in St Mary’s Hospital, Paddington.

"But this seizure is massive and the normal intervention has not been enough to bring him out of it. Every minute causes more brain damage. Every minute is one closer to him dying. Nick Hurd should come and watch this and then explain why Billy should be allowed to die.”

By 4.30pm on Friday, Billy was taken by ambulance to an emergency ward in Great Ormond Street Hospital.

Urgent calls were made to Dr David McCormick, the consultant in paediatric neurology who specialises in epilepsy and works closely with the government.

Billy’s mum Charlotte had been advised on Monday to have her son examined by Dr McCarthy, but a week on but no appointment has been forthcoming.

Further calls were made to the Home Office by Dr John Burton in Belfast and Catherine Jacobson director of clinical research at Tilray, whose seven-year-old son has intractable epilepsy and whose company is running the medicinal cannabis trial Billy was placed on.

Lead consultant on the paediatric ward at St Mary’s, Dr Rebecca Salter, treated Billy on Thursday night.

Her report stated: “Impression: recurrence of seizures possibly due to stopping Medicinal Cannabis Oil. At risk of subsequent seizures.”

Her prediction was correct.

Belfast Live can reveal the Tilray anti-epileptic medication prescribed for Billy in Canada last week was taken on Thursday from Heathrow Airport where it was confiscated to the Home Office.

A source said: “Seven bottles, one opened, the rest sealed, were taken from Heathrow with a destination of the Home Office. They would have been there long before Friday morning.”

Timeline

Monday noon: Tilray medicinal cannabis confiscated at Heathrow Airport.

Tuesday 1.01am: Seizure and loss of consciousness.

Wednesday 3am : Wrist movements which lasted hours.

Wedneday 11.30pm: Seizure and loss of consciousness.

Thursday 6.30am: Seizure and loss of consciousness.

Friday: Series of seizures.

Friday 4.25pm: Ambulance takes still unconscious Billy to Great Ormond Street Hospital.

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