(fashion) Mother Rachel Rankmore (pictured with son Bailey) is worried how she will continue to pay for her 17-year-old's cannabis oil which helps control his seizures
The family of a teenage boy with epilepsy are worried that they will not be able to afford the £4,000-a-month cost of cannabis oil which helps control his condition.
Bailey Williams, 17, from Cardiff, has suffered from hundreds of seizures a day since he started having them aged two.
During bad episodes, Bailey can turn blue and his parents Rachel Rankmore and Craig have to sleep by his side each night in fear he will suffocate against his pillow
However things have improved in recent months for Bailey, who attends a special needs school in Penarth, because he has been taking cannabis-based medication.
Mother Rachel said: 'Bailey has been having multiple seizures every day since he was two and a half.
'When he was seven his condition was getting worse and he was diagnosed with a rare form of epilepsy called Lennox-Gastaut syndrome.
'He's had all sorts of different treatments over the years and he would have hundreds of seizures a day. We had regular visits to the hospital and he was loaded with different drugs.
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Bailey Williams, 17, pictured left and right, has hundreds of seizures a day but since taking cannabis oil they have become easier to control and less frequent
The teenager, pictured left with his brother Ross and father Craig, can now play with his family
'He would have different types of seizure - screeching noises, shaking of the whole body, sometimes he would have drop seizures where he would fly across the room and fall to the floor.
'He'll turn blue and be in a complete comatose state afterwards where he can't walk or talk or do anything. It got to the point where there were no drugs left to try.'
Bailey's life was changed drastically last November when a change to the law meant that cannabis with Tetrahydrocannabinol (THC) - a psychoactive constituent of cannabis - available for prescription from specialist doctors for medicinal use.
This meant that Bailey's family could treat him with a cannabis oil called Bedrolite, which is administered via a syringe three times a day.
However, this medication is not available on the NHS, meaning Bailey's family must pay for a prescription from a neurologist in London.
The first prescription, given in June, cost £2,000. The next one, due in September, is likely to cost £4,000. That will last Bailey around a month.
Bailey. pictured with his mother left and right during a seizure, is given a cannabis oil called Bedrolite. However, this is not available on the NHS and the family pay for a prescription from a neurologist in London
The first prescription cost £2,000 and the next one, due in September, is likely to cost £4,000. Pictured is Bailey, middle right, with his young brother Ross, left, and parents Craig and Rachel
Bailey, pictured attends a special needs school in Penarth and his mother said his personality has started to come back since taking cannabis oil to help with his seizures
Having already raised around £15,000 through fundraising drives, Bailey's mother knows that funding the cannabis oil privately is not sustainable in the long-term.
'Until the NHS start writing prescriptions this is what it will be like,' she said.
'It's really frustrating because the law has been changed but it's not being actioned on. People have said it's not about money but it clearly is.'
The National Institute for Health and Care Excellence (NICE) has not recommend the wider use of medical cannabis, and will issue its final guidelines on the matter in the coming months.
For Rachel, she cannot contemplate going back to a time when Bailey's cannabis oil was not readily available, but at the same time is fearful of the future if the medicine is not made available on the NHS.
'If we could get an NHS prescription, that would change everything. We can't keep asking people for help, we can't keep begging for money.
The family have already raised £15,000 to pay for the treatment and Bailey's mother said she knows they 'can't keep asking