BBCTurning 21 is a milestone for most.
For Charlotte Caldwell, celebrating her son Billy’s 21st birthday was something she feared would never happen.
Billy Caldwell, from Castlederg in County Tyrone, has a severe form of epilepsy, which at one point had him suffering hundreds of “life-threatening” seizures a day.
After a legal battle, Billy was prescribed a cannabis-based medicine which stopped his seizures.
Behind the birthday celebrations is a story that helped change UK law.
Billy was born with severe life-threatening form of epilepsy that proved extremely difficult to control. At the height of his illness he was having between 300 and 800 seizures a day.
“He had been tried on cocktails of anti-epileptic pharmaceuticals and they just weren’t working” Charlotte said.
For his family, the seizures brought constant fear.
“Epilepsy has to be one of the most brutal conditions that any child can have.
“You have no control over them and you have to just stand there and watch your child seize.”
Charlotte began searching for another way of controlling Billy’s seizures.
That search brought her and Billy to Los Angeles and Canada and eventually led her to cannabis-based medicine.
She said the treatment made a profound difference.
“Billy has now gone three years without a seizure.
“I would say that prescription cannabis has not only given Billy back his right to life but it’s given me back my right, as a mother, to hope.”
A campaign that changed the law
Billy’s case became one of the most high profile stories in the campaign to change Britain’s rules on medical cannabis.
There was widespread criticism when Billy’s treatment was seized at Heathrow airport after Charlotte returned from Canada with cannabis oil.
The incident became a defining moment in the campaign and helped put the issue firmly on the political agenda.
In 2018, it was made legal for specialist doctors to prescribe cannabis derived medicines in certain circumstances.
Charlotte said the battle isn’t over, however.
‘The system isn’t working’
Although medicinal cannabis can now legally be prescribed in the UK, Charlotte said access remains a major problem particularly for families who can’t afford private treatment.
Billy receives his medicine through the NHS, something Charlotte said the family is “blessed” to have, but she argues that many needy patients are being left behind.
“Prescription cannabis is basically available in the UK because Billy changed the law” she said.
“But it’s a private sector prescribing, you’ve got to buy it and you’ve got to pay for it.”
She believes that’s particularly difficult for people with chronic illnesses who may be unable to work or have limited incomes.
“The vulnerable chronically ill don’t have £400, £500, £800 or £1000 a month to pay for private medicine.”
She’s careful not to describe cannabis as a miracle cure.
“Prescription cannabis is really no different to pharmaceutical medication you can give an opiate for back pain and it might work for one person and not another. Prescription cannabis is no different.”
Charlotte CaldwellFrom surviving to thriving
The biggest changes Charlotte sees in Billy today are not just medical.
“His balance and walking have improved he can now go up and down steps something he couldn’t do until relatively recently,” she said.
His social interaction has also improved.
“If somebody had walked into the room a number of years ago Billy would just have totally ignored that person.
“Now if somebody walks into the room, he basically walks straight up to them and tries to hold them, that’s his way of saying ‘hello’.”
Billy still needs round the clock care and Charlotte says that’s unlikely to change. But life at home is very different from the years when his epilepsy was uncontrolled.
“There’s a quietness about our house now it’s not chaos and beeping machines and medicines lined up along the counter and fear.”
Charlotte remembers being afraid to go to sleep because she was worried that Billy might have a seizure and die during the night.
“I don’t have that fear anymore and that’s nice.”
