Image by: Rachel Rankmore
The family of a teenage boy with a rare form of epilepsy are struggling to pay for his £4,000 a month cannabis oil which stops him having hundreds of seizures a day.
Bailey Williams, 17, has had epilepsy since the age of two, but in recent years it has became so severe he would regularly fall to the floor and turn blue.
Doctors tried everything – endless kinds of drugs and therapies – but nothing worked, until a law change meant he was able to have full extract cannabis oil.
Bailey, from Cardiff, was given a prescription from specialist doctors for medicinal use in June, and his parents said it instantly reduced his seizures to less than five a day.
But it is still not available on the NHS, meaning Bailey’s parents have to pay thousands to a neurologist in London for the medicine, which is injected three times a day.
His mum, Rachel Rankmore, 43, called on the NHS to start providing prescriptions so families do not lose out because they can’t afford the drug.
Image by: Rachel Rankmore
Image by: Rachel Rankmore
Former banker, Rachel, said: “Without it, he has hundreds of seizures a day and it’s damaging his body.
“He has developed learning difficulties, mental delays and it has changed his personality.
“I thought the seizures might kill him. It’s heartbreaking and I’m scared I’ll lose my son.
“He has improved dramatically since being on cannabis oil and he’s only been on it two months.
“I finally feel like I’ve got my son back and I couldn’t bare to go back to what it was like before.
“But we are not by any means rich and that is just unsustainable. We can’t afford it.”
Bailey has Lennox–Gastaut syndrome, a form of epilepsy only found in around five of every 100 children with the condition, and was diagnosed aged two.
At first his condition was manageable for his parents, Rachel and Craig Williams, 48, a garage manager, and he only had a fit once or twice a month.
But his seizures got worse and by the age of seven Bailey was fitting hundreds of times a day.
His family changed his diet in a desperate bid to stop the seizures, but when that didn’t work inserted a device into Bailey’s chest, aged seven.
It sends signals to his brain that helped to limit the frequency and severity of his fits, but it only worked for a short time.
At its worst Bailey’s seizures make him fall to the floor and turn blue, and often leave him wheelchair bound and unable to feed himself or talk.
Mum-of-two, Rachel, said: “We have bunged him up on so many drugs but nothing has seemed to work.
“He has different types of seizure and they make him screech and shake.
“He has drop seizures where he does 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.
“The seizures are just horrific. When they happen you can hear every bone in his body creak.
“It’s absolutely heartbreaking but we’ve had to learn to put our emotions to one side.
“It got to the point where there were no drugs left to try.”
Image by: Rachel Rankmore
Image by: Rachel Rankmore
Aged 14, during a hospital admission at the University Hospital of Wales doctors told Rachel there were no more drugs to give Bailey.
So the family took matters into their own hands and started to look into the benefits of treating epilepsy with cannabis oil.
They found a product called Charlotte’s Web, a form CBD cannabis oil sold in the USA, and decided to give it a go.
It cost £300 a bottle and would last about six weeks.
Bailey started taking it in 2015 and at first Rachel said she saw a “great improvement” in his condition.
She said: “It worked a treat. There were no emergency hospital visits or increases in medication.
“At the time we couldn’t get our hands on it in the UK.
“But even that reached its potential. He’s seizures go more violent again to the point where he had no quality of life.
“He could be sat playing one minute and the next he could be on the floor shaking.
“He ends up being sat in a wheelchair unable to walk or talk.”
Last November a change in the law made cannabis with Tetrahydrocannabinol (THC) – a psychoactive constituent of cannabis – available for prescription from specialist doctors.
It has allowed him to be treated with a cannabis oil called Bedrolite, since June.
But it’s not available on the NHS, forcing Bailey’s family to pay for a private prescription from a neurologist in London, costing up to £4,000 a month.
The family have already raised around £15,000 to put towards treatment but are crowdfunding for the future.
“The difference the oil has is miraculous,” Rachel said.
“The evidence is all there and a lot of children need these prescriptions.
“The improvement has been astonishing. It’s not his fault the cannabis oil works for him and he should not be punished for it.
“If we could get an NHS prescription, that would change everything”, said Rachel.
“We can’t keep asking people for help, we can’t keep begging for money
“Until the NHS start writing prescriptions this is what it will be like.”
The National Institute for Health and Care Excellence (NICE) has not recommend the wider use of medical cannabis.
Rachel said: “I thought he would be damaged forever but we’ve finally got the old Bailey back.
“It’s been amazing for us and that has been delightful.
“It’s hard to explain what it’s been like caring for a sick child and we need to spend time repairing our family now.
“We need to learn to get our family life back.”
“If we have to give the medicine up he will not be here for much longer.”
Bailey’s fundraising page can be found at: www.gofundme.com/f/mission-for-baileys-shakes
Image by: Rachel RankmoreVideo by: Rachel Rankmore
