The boy who helped change UK law on medicinal cannabis, is showing ‘miracle changes’ in motor skills and decision making with his epilepsy kept at bay by the plant based drug.
In the last two years Billy Caldwell has suffered none of the devastating seizures that once needed life-saving medical intervention.
His mother Charlotte believes now that Billy's brain has been given a vital period of rest thanks to being seizure-free, his development is improving and new skills and new behaviour are evident.
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She explained: “I’ve seen huge improvements in Billy in the last two years in particular. He's 17 now and developing into a young man but during puberty, seizures can really kick off as the body and hormones change. However Billy has had just two 30-second seizures in more than two years and quickly recovered very well from them both.
“I feel that being free of the big seizures he used to have, the seizures that he couldn’t come out of on his own, has allowed his brain time to rest and I believe he has experienced healing as a result.
"Certainly I can see major differences in him today. His eye contact is vastly improved and he's very engaged and enjoying lots of activities more independently. He is decision making, he is calm, happy and content and he is making choices on what he wants to eat and when. He understands when he's hungry, when he's tired and when he's ready for lots of fun and activity. There are some things Billy will never manage alone, but every little step forward is celebrated as a major victory.”
It is 16 years since Charlotte was sent home from hospital with one-year-old Billy, and told to make him comfortable. But Charlotte was determined she would not give up on her son’s future and battled for years to find a treatment to slow or stop the seizures that were damaging his brain.
In 2016 doctors in the US treated Billy with medicinal cannabis with incredible results but the Caldwell's stay in Los Angeles came to an end in February 2017 as funding ran out. In 2018, the pair travelled to Canada for more help, and on June 11, 2018, they travelled back from Ontario with privately prescribed medicinal cannabis to treat and keep the 100 seizures a day at bay.
But border officials at Heathrow Airport seized Billy's medicinal cannabis oil which was outlawed in the UK, and it was locked in a safe in the Home Office. Stranded in London just minutes away from what Charlotte described as Billy's lifetime, it took just five days for her son to be hit by potentially deadly back-to-back seizures.
He was admitted by ambulance to hospital and desperate Charlotte went public with their plight, pushing the UK government onto a knife edge. With Billy’s condition deteriorating quickly and under intense pressure from the public, the media and lobbyists, Billy’s medical cannabis was finally administered to him in a London hospital.
And on November 1, 2018, new legislation was introduced to allow for medical cannabis prescriptions - however the law was written in such a way that doctors felt unable to put their name to prescriptions.
Today while Billy is assured of a lifetime supply of prescribed medication, Charlotte has carried on her fight to help other families and she says although Billy will never be able to live independently due to the damage caused seizures he started suffering as a baby, his quality of life is improving.
She said: “The key to saving Billy and saving as much as possible of his brain power, his thinking and reasoning ability, his motor skills and personality, has been preventing the seizures and it’s the medicinal cannabis that does that.
“Ensuring Billy's long rest from the big seizures has, I believe, allowed some healing and a degree of recovery. He is more engaged, he is quite obviously thinking and reasoning more than he'd been able to do previously and he is better able to control his own behaviour.
“I realise that Billy will always carry the brain injuries that were caused by previous seizures, that damage is done but there’s still ability there and he is showing me more and more ability and engagement.
“For a family with a child without challenges it may sound like nothing, but to me seeing Billy walk to the fridge and choose the yoghurt he wants to eat, is a miracle change I could once only hope for.
“He's thriving and I am seeing his personality develop more freely now. He’s cheeky, he’s naughty in a lovely childish way and he teases me with the things he does and he knows it. So for example, we have a coal fire and he knows he’s not allowed to touch the coal, but he’ll look at me and put his hand in the coal bucket and watch my reaction.
"So I tell him ‘no Billy’ and he stands back and starts laughing and goes again to get another reaction from me. For Billy this is fun but for me it's communication and a miracle because it’s a language he wasn’t able to speak before. Now he’s pretty fluent in teasing me and keeping me on my toes.
“If he puts his feet on the settee with his shoes still on, I tell him not to. I say, ‘Billy come on, shoes off’, and he stops and then if he wants to have a bit of craic, he does it again to get a reaction from me and he’s laughing away.
“In Asda when I used to go shopping it was hectic because Billy would be so overwhelmed and stimulated, he’d be trying to run about, trying to grab everything around him but now he’s calm and just holds my hand as we walk through the aisles. So he has learned to shop with me, to be calm and when he sees something he wants he just puts his hand on it to show me he wants it put in the trolley.
“The little boy who was always there is now coming out. I could never see that before. Because of all the seizures he was having and because of all the medications he was on, he was drugged up, dull, disengaged.
"But today Billy is like a new boy to me, a little boy I’m getting to know more about every day. Our language, our conversations have changed, Billy is different and over the last two years especially he has developed more and more.
“I'm beyond proud of him, of us both. Billy now has a chance to love and develop and learn and I feel really blessed and it's why I am determined to keep fighting for other children who've not had the chance Billy has been given, to have access to medicinal cannabis.
"So through the Billy Caldwell Foundation, we are working hard to help other families too. Seizures are desperately hard on a child, they have the potential to leave devastating and lasting damage and my drive is to help as many children as possible be assessed for medicinal cannabis to prevent the damage happening in the first place. I’ve always had an understanding that the more of the brain we save, the sooner we protect the brain from injury and damage, then the better for everyone.
“Today Billy’s medicinal cannabis is a tiny amount, just 164 micrograms of CBD and six milligrams of THC three times a day. He takes it from a little syringe into his mouth with no problem and it does its work to keep the epilepsy at bay.
“Billy has a guaranteed lifetime supply of the medication he needs, but other children are still waiting to have the same chance.
“Our fight goes on. We have managed through the foundation to help two other families access medicinal cannabis for their children and I'm confident there will be many, many more.
“More governments, more medicinal manufacturers are listening, and more attitudes are changing so the noise that has once drowned out the many voices calling for access to medicinal cannabis is now recognised for what it is, noise.
“I know from watching Billy grow and thrive, that other children deserve the same chance and I want the public to know that I am working hard to make that happen - and I feel sure in time I'll have more good news to share.”
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