TWO YEARS ABANDONED
Billy changed the law to legalise his life-saving medical cannabis... but he is STILL denied it and is fighting the NHS all over again. Now his desperate mum says they are...
DRESSED as Harry Potter, he looks like any happy teenager enjoying a wizard time on his 15th birthday.
But Billy Caldwell’s mum thought he would never reach the milestone.
That is because he has been battling up to 300 life-threatening seizures every day since birth.
The only drug that can ease his epilepsy is cannabis oil.
But NHS medics are refusing to prescribe it despite the family winning a landmark legal fight to legalise it two years ago.
Now his mother Charlotte has told the Sunday People of her agony at having to go through another court battle.
She said: “I feel like Billy has been abandoned by the people who are suppose to care and should know better. There are other children who have been given it. Why is Billy being discriminated against? It’s cruel.”
A Canadian drug firm is providing Billy’s medicine free of charge but says this cannot go on for ever.
Crying
Charlotte, 52, said: “A medical company is keeping Billy alive right now. They gift Billy his medicine while the legal process is going on because I was running out of money and couldn’t pay for his medicine.
“We are going to be pushed into a full High Court hearing.
“If that fails then we have nowhere else to go and I don’t know what we are going to do.”
Charlotte, from Northern Ireland, also told of her joy that her son was now loving life thanks to the drug.
“We celebrated Billy’s 15th birthday last month which is too incredible,” she said.
“Billy just keeps making it and making it and making it – and it’s all t hanks t o medical cannabis.”
He started cannabis oil treatment in America in
2016 and Charlotte says the drops keep him seizure-free.
“This medicine brought my child to life,” she said.
“It has provided him with a life outside of being drugged into a shell of a person – someone who seizes until he turns blue in the face.”
But Charlotte still recalls with horror the moment NHS medics told her they could no longer help her son, who is also autistic.
“I remember crying hysterically,” she said. “Let me tell you how downright heartbreaking it is when someone tells you there is nothing left for your child.
“That is the worst feeling in the world, a knife right through your heart.
“People might never understand but there were so many things they said that Billy would never do, so many years they said we may not see.
“It’s beyond valuable to me to know that as long as Billy gets his cannabis oil every day he will be safe, he won’t have any seizures.
“It’s an amazing feeling. When you have a child who has seizures so bad that they can take his life from him,
TRAUMA: Billy in wait for treatment 2018 Billy and his mum Charlotte helped get law changed
that feeling is priceless, it’s not comparable to anything else.
“Months and months at a time he gets to be a child, it’s everything. He’s doing amazing, he’s loving life so much and health-wise he’s doing excellent with zero seizures.
“He is so happy, he’s so vibrant.” Next month Charlotte, of Castlederg, Co Tyrone, will go to the High Court in Northern Ireland.
She said: “Since the law changed in 2018 – which Billy helped change –
while the world continued to move, our world stood still.
“Billy requires round the clock care. While the outside world has progressed, I have been fighting with every single fibre of my being to have his NHS prescription reinstated.
“I have been fighting for my little boy’s life-saving cannabis and I live this every day. For the first 15 minutes of every morning I have a happy feeling, then I remember where we’re at.” Last month Billy’s clinician passed his case to doctors at London’s Great Ormond Street Hospital.
Charlotte claims that she was due to have a response on whether Billy should have the drug within five days
– but more than a fortnight later she is still waiting for answers.
Billy’s story has helped shine the spotlight on the prescription of medicinal cannabis on the NHS.
Other high profile cases include the campaign by the family of Alfie Dingley, seven, from Kenilworth, Warwicks, who had been forced to travel to the Netherlands for cannabis oil to treat his epilepsy.
Charlotte added: “I am so grateful to everyone for the love and support and the care they’ve given to Billy.
“So many people have come together to form this awesome community surrounding my son and it’s been amazing to see how much love and support the nation has given him through the years. I’m praying there will be a positive outcome.
“No parent should have to go to the courts to get their child life-saving medicine – it’s frightening.”
Since the law changed, cannabisbased medicine can be prescribed on the NHS for patients with multiple sclerosis or hard to treat epilepsies. Last month it was revealed just two children with epilepsy have had it on the NHS in the last two years.
Some families are thought to be paying about £2,000 a month privately.
Campaigners backed by the Sunday People and MPS from all parties are demanding Health Secretary Matt Hancock lift NHS restrictions.