Billy has seen his seizures reduced from up to 100 per day to just a few after being treated with cannabis oil
Time is running out for a desperate mother to keep her son from a fatal epileptic seizure after the Government ordered his doctor to stop prescribing him cannabis oil.
Billy Caldwell, 11, suffers from intractable epilepsy which means his horrific seizures can last for hours, and he must be pumped with medicine to stop them.
Billy from Country Tyrone, Ireland, became the first person to receive an NHS prescription for cannabis oil containing Tetrahydrocannabinol (THC) in 2017 after it was proven to dramatically reduce his seizures from as many as 100 per day.
He was first given the medical marijuana in Los Angeles where his mother Charlotte Caldwell took him for treatment, until a year ago.
When they returned to the UK Billy Caldwell doctor Brendan O’Hare continued with the prescriptions.
But when he informed the Home Office a year ago, they ordered him to stop.
Ms Caldwell is pleading with the Home Secretary to reverse the ban now that she has just 14 days’ worth of the oil left.
Billy Caldwell experiences seizures which are so severe he must be brought back from the fit with medication
Billy’s mum Charlotte is campaigning for her son to be able to keep his prescription for cannabis oil
Charlotte Caldwell is fighting for her son’s life as she fears his next seizure will be fatal. The Government recently stopped his prescriptions for cannabis oil
Cannabis oil containing THC has kept a boy from having near-fatal seizures up to 100 times per day
Ms Caldwell has described the ‘horrific’ seizures endured by her son, fearing the next one will be fatal.
She told MailOnline: ‘Billy’s seizures are silent. I call them the silent killers.
‘He has status epilepsy which means he can’t come round from the seizure on his own, he needs medicine and oxygen because he starts turning blue. One seizure can kill him. If it doesn’t work I have to call 999.
‘Our house is 50 minutes from the hospital and they begin working on him in the back of the ambulance.
‘When we arrive I can’t go in and I have to sit outside while they give him medicine to try and bring him back.
‘The nurses are so lovely, they come and give me updates, and they tell me ‘we don’t know if we’ll get him back this time’.
‘One seizure lasted seven-and-a-half hours a few years back.’
Billy Caldwell, now 11, suffered seizures which lasted up to 7.5 hours before he began using cannabis oil
Billy, who also has high spectrum autism has improved dramatically since taking the oil, with his focus and balance also coming on leaps.
However his mum has said it is not a magic cure, and she is only campaigning for medicinal use of cannabis– not recreational.
Ms Caldwell says she has been left ‘gobsmacked’ by the government decision, which could see her lose her son to a seizure.
She said: ‘When he started the treatment the duration of his seizures started to reduce they started getting shorter.
‘Then the number of seizures he was having reduced until Billy was seizure free’
‘I want to be clear – I would never say my son is cured.
‘But I want to say medicinal cannabis has given me back my right as a mother to hope for my son, and it has given my son back his right to life. Please don’t take that away from us.
‘We are just appealing for an individual from the Home Office to meet with us now.
‘It wasn’t a computer that made this decision
‘All I am saying is let’s sit down and talk – I think that is reasonable.
‘We have a solution. I have been working extremely hard with researchers on legislation for medicinal cannabis.’
Conservative MPs Crispin Blunt and GP and MP Dan Poulter have each met with Charlotte in Westminster.
They have both given her a ‘positive response’ and the mother is hopeful she will soon get to see the Home Secretary.
Recently politicians have indicated a change across the front and back benches in terms of cannabis reform.
Charities across the nation are also calling for change.
Genevieve Edwards, the MS Society’s director of external affairs said cannabis could help around 10,000 people with multiple sclerosis to relieve pain and muscle spasms when other treatments haven’t worked.
She said: ‘Because Sativex, a licensed treatment derived from cannabis, is rarely available on the NHS, many people with MS feel forced to turn to illegal forms of cannabis.
‘It’s wrong that people are driven to breaking the law to relieve these relentless symptoms. Other countries offer a safe and legal way to access cannabis for medicinal use. It’s time we did too.’
This week, Members of the Royal College of Nursing voted overwhelmingly in favour of lobbying the Government to change the law around the drug.
Billy’s mum is now asking for help from GPs and parents to sign an open letter to the Government to help her son.
A ‘New York model’ for cannabis reform?
Crispin Blunt MP is c-chair of the APPG on drug policy which is considering ways the Government can implement drug reform
Conservative MPs are ready to give the green light to cannabis legalisation in the UK, if it falls under the so-called ‘New York model’ it has been claimed.
MP Crispin Blunt, co-chair of the APPG on drug policy told crowds at the Cannabis Europa event in London change is coming.
He said: ‘I cannot find a colleague who does not think that patients should have medicine derived from cannabis
‘Politicians do not want to sentence a seven-year-old boy (Alfie Dingley) to death; that is not going to be a great place to be.’
The MP also suggested a form of legilisation such as that in New York might be the way the Government swings.
He said: ‘From what I have read it looks as though the New York model is the most appropriate for the UK.
‘Gps have to be qualified in cannabis and then it is individual prescriptions for patients.
‘The idea of smoking medicine is not a runner
‘This is another reason the NYC model is appropriate for the UK.’