Submitted by Billy C's mum, Charlotte from the United Kingdom

I'm Charlotte C. from the United Kingdom; I’m not a doctor. I’m not a politician. I’m just a mum who refuses to give up. When I close my eyes, I can still smell the bleach clinging to the hospital floors, I can hear the shuffle of hurried footsteps, the low hum of machines, the murmur of doctors trying to sound confident. But mostly, I remember the helplessness.

A mother’s fight

Here I was, December 2005, when Billy was four months old, and he had hundreds of seizures daily. I lost count after 300 seizures a day. Doctors said he was dying and suggested palliative care. But my heart whispered, "Not yet."

A late-night Google search led me to Professor Nordli in Chicago. He recommended what no one else had: a ketogenic diet. For the first time, Billy had 16 weeks seizure-free. With the seizures under control, Professor Nordli recommended an intense course of physiotherapy. Billy underwent 20 hours of physiotherapy a week, Monday through Friday, four-hour sessions. 

In 2010, after two long years of intense physiotherapy, four-year-old Billy was thriving. All was well for the next few years, with Billy's seizures remaining under control. Then, quicker than anyone could imagine, the seizures had returned with a fiery vengeance, but urgently trying to get an appointment, I was told there was a six-to-nine-month waitlist. I knew Billy didn’t have the luxury of time.

Desperation pushed me to consider something I never thought I’d pursue

Something not found on any prescription pad: a plant that could help save my son. The peace we’d fought so hard for vanished overnight. Medications failed. Surgery was ruled out. The doctors were out of answers and so was I. We had exhausted every conventional treatment, medications, diets, and even flying across the world, one word kept surfacing that no doctor back home wanted to say out loud: Cannabis. I did what felt completely unnatural and yet absolutely necessary, I looked beyond the NHS.

In Los Angeles, we found a doctor who not only listened but acted

It was the first time in years I felt like we weren’t being treated as a statistic or hopeless case, but as a family worth fighting for. Billy was prescribed THCA and CBD oil, tailored specifically to his condition. Almost immediately, the change was visible. Billy’s seizures lessened, not entirely gone, but drastically reduced. His energy shifted. His spark returned. We had tried everything else… and it was this, the plant everyone had warned us about, that brought my son back to me.

Plant Medicine collides with politics

Back in the UK, I knew we couldn’t afford to stay quiet. Billy’s life was being sustained by a medicine that was still technically illegal in our own country. 

In April 2017, Billy made history by becoming the first UK patient to receive an NHS Prescription for Medical Cannabis. Finally, he could get the treatment he needed and look to the future. Billy was allowed to continue that treatment until May 2018.

Just three weeks remaining on his existing prescription

Billy’s GP informed me that he could no longer supply Billy with medicinal Cannabis. An hour or so later, I called the health department, which informed me that if I were to find a Medical Cannabis product that had completed clinical trials, they would allow Billy's GP to continue prescribing.

My new search led us to Toronto, Canada, where a pediatric neurologist was in the process of carrying out a trial on children like Billy with Cannabis based medicine. After diagnostics and a lengthy consultation, my little boy was prescribed a supply of Medical Cannabis.

Seized at the border, risking it all for Cannabis medicine

Just six days after finally securing a new supply of life-saving medicine, tragedy struck. On June 11, 2018, as we landed at London Heathrow, customs officers were forced to confiscate Billy’s medicine. In that moment, it felt as if a death sentence had been handed down to my son. Without this vital treatment, we knew the seizures would return and they did, with terrifying force. What came next was a desperate plea to government officials, a media storm that shook the nation, and a race against time as Billy’s life hung in the balance. All because the medicine that was keeping him stable had been locked away just two miles down the road.

I’ll never forget the moment the hospital nurse quietly said, “I’m afraid Billy’s condition has moved to life-threatening.” The machines beeped, the staff moved quickly, and I clung to Billy’s hand as it grew limp in mine. Then, the doctor placed a steady hand on my arm and whispered, “I’m going to get your little boy’s medication back. Hang in there.” Hours later, at 2:30 a.m., that same doctor walked through the hospital door holding a small bottle of hope. A taxi had delivered Billy’s medicine from the vaults of the Home Office. That morning, he received his first dose.. By Saturday evening, my son was stabilizing. It felt like watching a miracle unfold in real time.

From one boy’s crisis to a national wake-up call

His NHS Medical Cannabis prescription was reinstated, a first for the UK. And on Monday, June 18th, Billy was well enough to be discharged. He ran, laughing, through the hospital doors and straight into the arms of the world’s press. He was alive. 

The very next day, on June 19th, then Home Secretary Sajid Javid stood before Parliament and announced that Billy’s medicine had been returned. He also called for a full investigation into whether Cannabis could, in fact, have medicinal benefits. Billy’s story had not only saved his life, but it also sparked a national conversation that would change the future for many.

Cannabis continues to keep Billy alive

In fact, let me rephrase that. Medical Cannabis ensures that Billy has a life full of magic, mischief, and mayhem. Every young Wizard's dream. My son is no longer a shell of a boy, enduring seizures until he turns blue. He is beyond happy and healthy – my own little wizard, who brings as much joy to my life as the adventures of Harry Potter and friends bring to his.

Billy's Cannabis oil is a 25:1 CBD/THC tincture administered 3 times per day. Billy has now been seizure-free for over a year and a half. Just magic!

Medical Cannabis isn’t a miracle. It’s medicine

And it shouldn’t take a media campaign, international travel, or a fight with the government to access it, especially when lives like Billy’s hang in the balance.

Our story isn’t over. Billy still needs this medicine to stay stable, and I’ll never stop fighting to make sure he and every other child like him can access it safely, legally, and without shame.

Because when the system turns its back, sometimes it's the plant that turns toward you.

This is Billy’s personal story and not meant to be medical advice. It is for informational purposes.

To work with a medical Cannabis professional, please visit our directory of coaches, educators, and medical professionals. Everyone's Endocannabinoid System (ECS) is different; good results start with the right approach. You don't have to figure it out on your own.

If you need help with any terminology in this article, you may find some answers in our glossary.