News | World News | Mother stopped with cannabis oil says son suffered first seizure in 300 days

Mother stopped with cannabis oil says son suffered first seizure in 300 days

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  • Charlotte Caldwell said her son Billy suffered his first seizure in 300 days today 
  • Billy, who has severe epilepsy, had his cannabis oil medicine seized yesterday
  • Caldwell travelled to Canada to obtain the drug but officials took it at Heathrow
  • She is begging for its return, saying officials were signing Billy's death warrant

By Cheyenne Roundtree and Richard Spillett for MailOnline

Published: 07:34 EDT, 12 June 2018 | Updated: 08:23 EDT, 12 June 2018

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A mother who was stopped with cannabis oil at Heathrow Airport says her epileptic son suffered his first seizure in 300 days after his medicine was seized. 

Charlotte Caldwell's son Billy, 12, suffers from severe epilepsy and she claims the only way to prevent his seizures is through prescribed medicinal cannabis oil. 

The Northern Ireland mother travelled to Canada to obtain the 'life-saving' medicine but the banned oil was seized yesterday at Heathrow.

Ms Caldwell is begging for its return after Billy suffered his first seizure in 18 months due to missing his dose yesterday, she said while appearing on This Morning today.

Charlotte Caldwell whose son is suffering from severe epilepsy  tried to 'smuggle' cannabis oil into the UK to keep him alive. She revealed today he suffered his first seizure in 300 days after officials seized the medicine yesterday
Charlotte Caldwell whose son is suffering from severe epilepsy  tried to 'smuggle' cannabis oil into the UK to keep him alive. She revealed today he suffered his first seizure in 300 days after officials seized the medicine yesterday

Charlotte Caldwell whose son is suffering from severe epilepsy tried to 'smuggle' cannabis oil into the UK to keep him alive. She revealed today he suffered his first seizure in 300 days after officials seized the medicine yesterday

Charlotte Caldwell is begging for her 12-year-old son Billy's anti-epilepsy to be returned after it was sized by authorities at Heathrow airport following her flight from Canada
Charlotte Caldwell is begging for her 12-year-old son Billy's anti-epilepsy to be returned after it was sized by authorities at Heathrow airport following her flight from Canada

Charlotte Caldwell is begging for her 12-year-old son Billy's anti-epilepsy to be returned after it was sized by authorities at Heathrow airport following her flight from Canada

She said: 'Yesterday was the first time in 18 months he missed his medication.

'It was the first time in 300 days he had a seizure.

'He missed his last treatment at 3.30pm yesterday. This morning at 1.05 he had his first seizure in 300 days. A small 30-second seizure. 

'They should at least have the decency to try to work with me. They can't just take it away. He needs his medication today.

'They signed his death warrant. It's anti-epilepsy medicine. Nothing else. You can't get a high off this medication, even if you drank 40 bottles of it.' 

She added: 'I'm saying, please give me back his medicine today. He needs his medication. You just signed his death warrant.'

Billy became the first patient in Britain to be prescribed cannabis-based medication on the NHS after enduring up to 100 seizures a day and routinely ending up in hospital.

He was originally given the treatment by a doctor in the US, where it is legal in the majority of states. Ms Caldwell said it rapidly stopped Billy's seizures and drastically improved his quality of life. 

On Monday, Ms Caldwell returned from Canada with the prescribed cannabis oil and was stopped at Heathrow Airport, where the medicine was seized
On Monday, Ms Caldwell returned from Canada with the prescribed cannabis oil and was stopped at Heathrow Airport, where the medicine was seized

On Monday, Ms Caldwell returned from Canada with the prescribed cannabis oil and was stopped at Heathrow Airport, where the medicine was seized

Ms Caldwell, pictured at Heathrow with her son, said she will return to Canada for the oil
Ms Caldwell, pictured at Heathrow with her son, said she will return to Canada for the oil

Ms Caldwell, pictured at Heathrow with her son, said she will return to Canada for the oil

On Monday, Ms Caldwell returned from Canada with the prescribed cannabis oil and was stopped at Heathrow Airport, where the medicine was seized.    

She said: 'Those meds were prescribed by the world's biggest Paediatric hospital - they know what they are doing.

'I was horrified when they were taken from me.

'It may well to turn out to be a death sentence for my son.'

Ms Caldwell added: 'Nothing they could offer me could left me feeling the devastation or the urgency of the situation.

'I need another plan - I would rather have my son illegally alive than legally dead.'

Ms Caldwell has vowed to return to Toronto and keep trying to bring the treatment to the UK.

She said: 'It's a very sad day in 2018 that us parents who have children with this absolutely brutal condition, epilepsy, that we have to flee our own country to get medicine for our children.'

Asked what she would do next, she replied: 'I'll just go back to Canada and I'll get more because my son has a right to have his anti-epileptic medicine in this country.'

She described the customs officers who seized the oil as 'absolute gentlemen', adding: 'They were very conflicted about removing it, one of them had tears in his eyes.'

She was not cautioned by border officials, Sky News reported.

The families of eight other children with epilepsy who are supporting her campaign met her at the airport to show their support.

She had been back and forth to the US trying to ensure her son gets the treatment he needs
She had been back and forth to the US trying to ensure her son gets the treatment he needs

She had been back and forth to the US trying to ensure her son gets the treatment he needs

Charlotte Caldwell had banned cannabis oil she brought to the UK to treat her son Billy seized today at Heathrow. She later met minister  Nick Hurd at the Home Office to discuss the case
Charlotte Caldwell had banned cannabis oil she brought to the UK to treat her son Billy seized today at Heathrow. She later met minister  Nick Hurd at the Home Office to discuss the case

Charlotte Caldwell had banned cannabis oil she brought to the UK to treat her son Billy seized today at Heathrow. She later met minister Nick Hurd at the Home Office to discuss the case

Ms Caldwell insisted they would continue campaigning to have the oil made available in Britain.

She said: 'We will not stop, we are not going to stop. We are not going to give up. We have love, hope and faith for our kids. We are going to get the medicine for our children so they might as well give it to us.

'I'm horrified that they have removed it.'

The single mother from Castlederg, County Tyrone, was left distraught last month when the Home Office told her family doctor to stop doling out the drug or face suspension or withdrawal of their licence to practise.

She added: 'It's Billy's anti-epileptic medication that Nick Hurd has taken away, it's not some sort of joint full of recreational cannabis, it is his anti-epileptic medication that he has taken off me at the airport today.'

Ms Caldwell insists the oil dramatically improves her son's condition and wants him to be given the treatment in the UK
Ms Caldwell insists the oil dramatically improves her son's condition and wants him to be given the treatment in the UK

Ms Caldwell insists the oil dramatically improves her son's condition and wants him to be given the treatment in the UK

She later met Mr Hurd at the Home Office on Monday afternoon to plead to him 'parent to parent' to get the oil back.

After the meeting, she said Mr Hurd had not returned the oil.

Ms Caldwell gave up a career in the tourism industry shortly after Billy was born.

Her relationship with Billy's father fell apart around the time the boy's epilepsy became evident when he was four months old.

Recalling that time to the Mail On Sunday's Ian Birrell, she said: 'I just felt powerless and sick in my heart... he was having hundreds of seizures a day and they could not get them under control.'

After doctors told her they could do no more for the boy, she raised £250,000 in just ten weeks to fund treatment in Chicago.

She spent two years living there as her son was given intensive physiotherapy to boost his development.

When the cash ran out, she borrowed £25,000 from a bank to pay for private treatment and moved to Oxfordshire.

When the epilepsy returned two years ago, Ms Caldwell raised more cash and returned to her US doctor, who had moved to a Los Angeles hospital.

He discussed the concept of medical cannabis, sent her to a specialist and eventually they found the correct dosage to stop the seizures.

After eight months in California, funds dried up again. The pair returned to Northern Ireland.

In April last year, her GP to prescribe cannabis oil, supplied by an American company – until the Government warning last month to stop.

What are the laws on the medicinal use of cannabis and cannabis oil? 

Cannabis products containing THC (the chemical that intoxicates users of the drug) are illegal in Britain under the 1971 Misuse of Drugs Act.

Campaigners argue this muddles recreational and medical use, but Ministers are wary of reform amid concerns over mental health. 

But the laws on the medical use of marijuana were liberalised in Canada in 2001 and the drug prescribed for Billy Caldwell is made by Tilray, a British Columbian manufacturer.

Doctors who back the use of the oil say it would be impossible to get high from it and since it is an oil, the THC cannot be separated out.

In a statement at the weekend, the Home Office said: 'We are sympathetic to the difficult and rare situation that Billy and his family are faced with.

'While we recognise that people with debilitating illnesses are looking to alleviate their symptoms, it is important that medicines are thoroughly tested to ensure they meet rigorous standards so that doctors and patients are assured of their efficacy, quality and safety.'

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