I AM Billy's Story
The Boy who Lived
How it All Began
2005
Do you remember what you were doing in the December of 2005? I do, as clearly as though it was yesterday. While most people were hanging decorations and preparing for a magical family Christmas, I spent the first of what would become sixteen weeks in the children’s ward of The Royal Victoria Hospital, Belfast.
When I close my eyes, I can still smell the bleach that coated the floors and hear the chatter of harried doctors and nurses. Most pertinently of all, though, I remember the heartbreaking feeling of helplessness and complete and utter despair that enveloped me throughout that time. At four months of age, Billy had just experienced his first ever epileptic seizure , a prolonged eight hour status seizure.This means that Billy’s condition is so severe that he is prone to prolonged seizures, or multiple attacks within the same day. All epilepsy is dangerous, but status epilepticus is the riskiest of all.
Anybody that lives with this condition risks permanent, irreversible brain damage, or death, with every seizure. As you can imagine, this meant that my baby boy was subjected to countless tests and examinations during these long four months in hospital. I do not have enough fingers and toes to count the number of seizures his tiny body endured over this period, but I do know it to have been around 300 – possibly more – each and every day. I administered a cocktail of prescribed anti-epileptic drugs into Billy’s little body but none of them worked.
Eventually, there was no avoiding the elephant in the room. My baby boy was dying. Doctors insisted that the best course of action would simply be to sedate Billy with a steady flow of morphine to end his life. This way, when the inevitable happened, it would be quiet, peaceful, and within my arms. My heart was shattered.
Home to Die
2006
I was not prepared to accept this outcome. At eight months old, Billy was eventually discharged. With a broken heart and tears blurring my vision, Billy and I headed home. I was told that my son would be dead within six months; that seeing his first birthday would be a medical miracle.
Much like our time in the hospital, the next few months are burned eternally onto my memory. I can still taste the salt of Billy’s sweat-drenched skin while he seized relentlessly. I was forced to accept that while parents can kiss a grazed knee better, the same cannot be said for drug-resistant epilepsy. All I could do was watch my baby waste away before my very eyes. He had no energy and was completely disabled. He could not lift his own head, hold a sippy cup or a toy.
I did everything in my power to keep my little boy alive, but his condition continued to pound and pulverise his little body.
Everyday my thoughts were dominated with the question – maybe if I had the financial resources for the finest doctors, this story would follow a different path – for good or ill. I did not, though, and even if I could, where could we go?
Despite this, little did I know, Billy was a born fighter and he was about to take me on a journey that would turn our world inside out, upside down, back to front and left to right.
Mum on a Mission - Scouring the Globe
2006
It’s hardly a secret that consulting Dr Google, MD, for medical advice is not always the best idea. But I was beyond desperate. Throughout the night while Billy slept I desperately scoured the globe for potential solutions. That search was how I discovered Professor Nordli, a world-renowned paediatric epileptologist based in Chicago, and I reached out to him in an act of desperation. Having couriered Billy’s medical records straight to him, Professor Nordli declared that he was confident that he could help. Finally, I remembered what hope felt like – my heart soared!
Fundraising
2006
Now, as anybody familiar with American healthcare knows, nothing comes free in the U.S.A for such a unique and complex case as Billy’s, requiring the assistance of an experienced consultant the expense was astronomical. There was no way I could afford the diagnostics myself, especially with travel and accommodation to consider too. I launched “Billys Ray of Hope“ and reached out to our local media.
This was a game-changing moment for Billy. The generosity of family, friends and the general public was breathtaking, ensuring that my long-shot dream of getting help for my beautiful baby became a reality.
Billys brother Kyle - ran 350km around Ireland; the weight of Billy on his back
Chicago Hope
2007
In 2007, when Billy was only 18 months old, I found myself packing our cases and boarding a transatlantic flight to Chicago. Under the care of Professor Nordli, Billy was weaned off five of his anti-epileptic pharmaceuticals, all bar one; and placed on a ketogenic diet. The transformation was astonishing. For the first time in Billy’s short life, he achieved 16 weeks, seizure free. I was elated! Professor Nordli saved his life. At that point, with the seizures under control, Professor Nordli recommended an intense course of physiotherapy. I enrolled Billy at The Pathway Center, Chicago, where Billy underwent 20 hours of physiotherapy a week, Monday through Friday, four hours per day.
The physiotherapist’s first task was to teach Billy how to hold his own head. Then he was taught how to sit, to crawl, how to stand and how to hold a cup or a toy.
In 2010, after two long years of intense physiotherapy, four-year old Billy and I returned to Northern Ireland. It was at the end of that trip that my biggest dreams were realised… Billy was not only able to walk through Dublin airport, under the power of his own legs, when he saw the family waiting for his arrival, he ran! That moment was truly unforgettable. We all hugged and cried uncontrollable happy tears.
All was well for the next few years, with Billy’s seizures remaining under control. Happy Ending? Not yet! Seizures Return.
It was June 2016 when I felt the ground shift from beneath my feet once again. I woke up and Billy, now ten years old, was lying beside me blue and seizing uncontrollably.
Billy had been sticking rigidly to his diet, completing his exercises, and living his best life. He had discovered a passion for everything Harry Potter. Our house was filled with magic, mischief and mayhem. Then, quicker than one could say “expelliarmus,” right there, the seizures had returned with a fiery vengeance. I desperately sought an urgent appointment with Billy’s NHS neurologist but was told there was a waiting list of six to nine months. I knew deep down Billy didn’t have the luxury of time.
Los Angeles - Back to His Saviour
2016
In desperation and no one else to help my boy I found myself setting up a new fundraising campaign, “Keep Billy Alive” and making a desperate call to Professor Nordli. Thankfully with the generosity of the public, family and friend’s, once again we were able to return Billy to Professor Nordli. And once again I found myself packing our suitcases. This time, though, we were bound for Los Angeles, to where Billy’s saviour had relocated.
My little boy was then assessed again, with epileptic brain surgery discussed, but quickly dismissed as an unsuitable option.
There were no guarantees of success, and the procedure’s risks could have included leaving Billy confined to a wheelchair for life. Billy had ran out of options; I agonised over this decision but decided I could not rob my little boy of his ability to walk. He had worked so so hard in finding his legs. But I was determined that, with the proper treatment, wec ould get the seizures controlled and my determined little boy would live.
After long detailed consultation with Professor Nordli Billy was referred to another specialist consultant who specialised in medical cannabis.
It was agreed that Billy would undertake treatment using micro doses of cannabis oil. Initially, results were not forthcoming, but over ten weeks, incredibly, the medicine began to work. Billy’s seizures reduced in quantity and intensity, then ceased entirely. After eight months of treatment and observation, Billy was permitted to return home. And crying happy tears once again, February 2017 we touched down on home soil.
The First NHS Prescription
2017
I won’t claim that things were easy upon getting home. However , April 2017, Billy became 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.
Our World Crashes
May 2018
May 2018, Billy’s seizures were still under control. It was a beautiful sunny day. Billy was playing happily in the garden and I was hanging washing on the outside clothes line when I took the call followed by an email, that would bring our world crashing down like never before!
Just three weeks remaining on his existing prescription, Billy’s GP informed me that he could no longer supply Billy with medicinal cannabis… I froze! I couldn’t catch my breath. My heart broke into a thousand pieces and right there on that sunny afternoon I collapsed in the garden and cried. Beyond painful wailing sounds rang out! I was totally crushed!
An hour or so later, I picked myself up and called the health department which informed me if I were to find a Medical Cannabis product that had completed clinical trials they would allow Billys GP to continue prescribing.
Back to Scouring the Globe.
Not one to lay down to a challenge, once again, I took my search international – yet again scouring the globe to keep Billy alive. This time that search led us to Toronto, Canada, where a paediatric neurologist was in the process of carrying out a trial on children like Billy with Cannabis based medicine.
June 5th 2018, once again I found myself packing up my little boys toys, clothes and medical equipment and boarding a transatlantic flight with Billy. We flew to meet with another experienced paediatric neurologist. After diagnostics and a lengthy consultation my little boy was prescribed a supply of Medical Cannabis.
Billy Makes History
June 2018
Six days later, June 11th 2018 Billys life saving medicine was promptly confiscated by tearful customs at London Heathrow Airport on our return home.
In the blink of an eye Billy’s death warrant had been signed! And once again my heart was shattered into a thousand pieces. I couldn’t wrap my mind around the cruelty. I knew without this medicine Billy’s seizures would inevitably return and the consequences for him would be fatal.
The official was understanding and upset but was forced to take this action by law. Medical Cannabis was illegal in UK.
From Heathrow we traveled directly to the home office whereI made a desperate plea for my little boy’s life saving medicine to be returned. But to no avail. By this time Billy’s story had spread through national media and was about togo global.
Within four days, Friday June 15th 2018, Billy’s seizures returned with a vengeance and unbelievably we found ourselves racing through the streets of London in an ambulance to Chelsea and Westminster hospital. My baby boy was in a prolonged life threatening status seizure.
The wonderful NHS treating doctor did his best, but we all knew the reality. He was treating Billy with his hands tied behind his back as his life saving medicine was locked away in the vaults of the home office, two miles down the road.
All I could do was confine myself to a waiting room – the biggest, longest waiting room of my entire life. I was completely crushed. This was beyond cruel!
Thankfully, my little boy had the most wonderful NHS doctor that was every bit as determined as me to save Billy’s life.
I will never ever forget the scene as the doctor stood in the side ward where the amazing NHS team were working so hard to save Billy. In the midst of all the urgent chatter, machines beeping, I heard a nurse state, “ I ‘m afraid Billy’s condition has moved to life threatening”… the doctor crossed the room and placed a hand on my arm and whispered, “I am going to get your little boys medication back, hang on in there ! In that moment I knew Billy’s chances of survival were slipping away. He was dying! I squeezed his little floppy hand harder and there we waited, holding on tight together.
And true to his word, at 2.30 am that morning the treating NHS doctor entered the hospital room with the only Medicine that was going to save Billy. He had gotten it back! The Home Office had returned my little boy’s medicine from the vaults of the home office via a taxi. Billy got his first dose that morning and later on a second. BySaturday evening he was starting to recover. It was miraculous to watch.
His NHS Medical Cannabis prescription was reinstated. Again, first for the UK.
Monday 18th June Billy was well enough to be discharged and ran, laughing out through the hospital doors to meet the world’s press. He was alive! My heart soared.
The next day, Tuesday 19th June the then Home Secretary, Sajid Javid announced in Parliament he had returned Billy’s medicine and ordered a full investigation into whether cannabis can have medicinal benefits.
My brave baby boy had gone from the brink of death to being responsible for a reversal of unfair, outdated fifty year old laws that were leaving chronically ill people to suffer.
A little boy from the foothills of Castlederg, Co. Tyrone, Northern Ireland had achieved in eight days flat what countless politicians, campaigners and lobbyists had failed to pull off for over five decades. History right there.
A Cruel Twist of Fate
November 2018
I wish I could say this is the point where we wrap up neatly with “and we lived happily ever after.” Unfortunately, Billy’s seizures returned later in the year, necessitating another trip to Canada.
Billy was entering puberty and thus needed a change in medication to accommodate adjustments his body was undertaking. His seizures were starting to break through.
This was not a problem in Toronto, but the NHS was wrapped up in red tape with the law change, 1st November 2018.
Billy’s NHS Paediatric Neurologist could not continue to prescribe the different medicinal cannabis he now required due to guidelines issued with the law change which stipulated there was no clinical trial data to justify prescribing children with Epilepsy Medical Cannabis.
Back to Canada
Once again I found myself packing my little boys toys, clothes and medical equipment and boarding a transatlantic flight. Billy was reassessed and prescribed a new Medical Cannabis product but despite the fact he had changed UK Cannabis laws and had been prescribed Medical Cannabis two times via NHS we we spent four months exiled in Canada while I frantically searched for a-doctor in the UK that could support this prescription so I could bring my little boy home legally and safely.
Homeward Bound
February 2019
Eventually, after countless sleepless nights and telephone consultations, I found such a specialist and we returned home on a private prescription. But my little boy’s battle was far from over.
My funding would only stretch so far, so I needed Billy’s NHS prescription to be reinstated. The only way to have our voices heard was to enter a long, exhausting legal process.
This ran for some time before the advisors of Matt Hancock – Secretary of State for Health and Social Care at the time –reached out. They expressed their sadness about our situation, sharing their belief that no family should need to go through a long torturous legal process simply to obtain life-saving medication.
RESCAS
October 2020
The result; the formation of the Refractory Epilepsy Specialist Clinical Advisory Service, or RESCAS.
RESCAS comprises a group of esteemed and eminent healthcare professionals, to whom a child suffering from Epilepsy that may benefit from the use of medicinal cannabis or is presently been treated with Medical Cannabis can be be referred.
The panel would then discuss whether an NHS-funded prescription would be appropriate. And if so NHS funding is granted.
NHS Funding Reinstated - No. 3
October 2020
Billy was the first case study presented to RESCAS that resulted in a positive outcome.
My boy has a habit of making history. In true Harry Potter style, he keeps believing in magic.
NHS funding for Billy’s medical cannabis was reinstated in October 2020. I remain eternally grateful to DHSC London and Robin Swann, Minister of Health for Northern Ireland – and, of course, the fantastic team of doctors at RESCAS , in particular Professor Helen Cross.
Their action helped to keep Billy alive.
Gratitude
It would be remiss of me not to mention that countless members of the public have joined us on this adventure, too, offering support and lighting the way when it felt that darkness would prevail.
Billy has captured the hearts of the world, from death’s door to beyond well – walking talI, laughing, loving life and the inspiration behind I AM Billy, advocating for all “Billy’s”.
Thank you to everyone who stuck with us during some of our most difficult times. And thank you even more to those of you who believed we had it in us to fight hard enough to see this day.
To every single person that has ever helped us – whether through a financial donation, advocacy, a kind word, or simply keeping Billy in their daily prayers. We are beyond humbled and filled with gratitude to have you all in our life.
Medical 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 Wizards 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 has now been seizure-free for over a year and a half. Just magic!
Let’s not forget – I was once told that he would not live for a year, period, let alone do so without a medical emergency. This grants me little more time to work with other vulnerable and chronically unwell patients through I am Billy.
I can pray, cry and support patients. I can share their joys and their frustrations. Their lows and highs. Using my lived experience, I know they know, I feel their pain. Most importantly of all, though, I can battle and advocate for them.
“We must never ever let this happen to another patient, as if we do, their future will be our past.”
I sincerely hope that my little boy’s case will be a footnote in history, a reminder of how times have changed and vulnerable chronically ill patients were treated so problematically.
Until that day, however, we fight on – and we are thrilled to welcome anybody that wishes to join us into our family.
This has been an extremely long torturous journey spanning sixteen years from Northern Ireland to London , Chicago , California and Canada creating history and a legacy that has changed the lives of thousands… There have been times that I have felt helpless, defeated, exhausted, and desperate. What I have never felt, though, is that giving up was ever an option.
Every time I look at Billy, I am reminded of what we have been through and how far we have come.
I am proud and beyond privileged he chose me to be his Mummy. Here’s to “The boy who lived” – despite all the odds being stacked against him.
We love you all
Billy and Charlotte x
