I am just an ordinary Mummy faced with an extraordinary challenge…. to keep my little boy alive.
My memories stretch back fourteen years.
And if I close my eyes I can still smell the hospital that was our home for sixteen long weeks. Our world was turned upside down – December 6 2005 when my baby boy suffered his first seizure at only 4 months of age.
My brave boy has a condition Drug Resistant Epilepsy & Autism – he is a status epileptic, whereby he requires rescue medicine to stop his seizures and requires oxygen turning blue and desaturating.
I can absolutely and honestly say during Billy’s sixteen week admission I lost count not only of how many seizures his fragile little body endured but also of the cocktails of anti – epileptic medications that were tried but failed. He was suffering three hundred plus seizures per day.
My baby boy was dying.
The daily ward round became something I dreaded . The doctor repeatedly insisting there was nothing left for Billy – day after day proposing an IV Morphine – in his own words “Billy would go to sleep on my knee, forever“!
No new treatments , no new choices.
Those words continue to haunt me to this very day. I was heartbroken.
I couldn’t accept it. I wouldn’t accept it.
Home to Die
After a sixteen week stay Billy was discharged home to die – given six months to live ….. he would not live past his first birthday. I was devastated.
Up until this very day I can taste on my lips the sweat from my Wizards brow – kissing him a thousand times over on a daily basis willing him to fight for his life, fight fight fight….
I can remember extreme pain in my heart as i began to realise my undying love – no matter how strong was most likely not going to save him.
In my heart I can still feel my desperation as I fought to keep Billy safe & healthy.
But no matter how hard I tried to protect him – the cards were stacked against us.
Because you see, drug resistant epilepsy has a way of taking possession of your little ones body – battering and pounding him until he is completely and utterly depleted like a lifeless doll.
No child or adult is safe from these cold diagnoses.
I don’t mind telling you I tried everything , just everything in my power to keep Billy alive – sadly I did not have the financial resources to get Billy to the best Clinics, find him the best doctors or the right treatment.
My beautiful brave boy was wasting away before my very eyes – completely depleted, drooling , no head control, couldn’t pick up a toy or his feeding cup – nor sit up on unaided.
Billy’s was completely disabled.
Mum on a Mission
Weeks of googling in complete and utter desperation I scoured the globe. That search led me to the U.S.A to Professor Nordli, a world ranking paediatric Epileptologist and after studying Billy’s medical records he was confident he could help Billy – but at a huge cost.
I launched a fundraising appeal and thankfully with the generosity of family and friends and the general public September 2008 I packed my little boy medical equipment, toys , clothes in our car and headed for the airport.
Professor Nordli weaned Billy of all anti-epileptic medicines – six in total apart from one and put him on the Ketogenic Diet.
It was that simple – for the first time in his short life (2 years) his seizures were controlled.
“Now we have this young man’s seizures under control, let’s get him into intense physio therapy and let’s see what we can tease out of him“ Professor Nordli said.
September 2010, 2 years later and crying happy tears I walked Billy home through Dublin airport. A forever mummy memory right there.
Billy remained relatively well for the next number of years, seizures very much controlled.
Sadly June 2016 seizures returned with a vengeance – the Demon was back.
Once again in complete and utter desperation I sought an urgent Medical consultation with Billy’s Paediatric Neurologist only to be told there was a waiting list 6-9 months – Billy didn’t have 6-9months to wait.
Back to Billy’s Saviour – Professor Nordli
I again found myself packing my little boys medical equipment, toys, clothes into our car and heading for the airport.
I returned Billy to his saviour Professor Nordli.
After undergoing a number of Medical investigations – conclusion – Billy was not a candidate for Epilepsy brain surgery – he was referred to a Cannabis Medicine doctor and started his journey on Cannabis Oil.
For the first number of weeks as the Cannabis Medicine was micro-dosed up to his target weight – there was no improvement – then it happened – seizures reduced, controlled – my baby boy started to heal.
After being exiled in the USA for eight months we returned home via Dublin airport with Billy’s life saving medicine.
Billy’s GP writes his Prescription for Cannabis Medicine – A UK first.
The powers that be to inform Billy’s GP he must cease writing Cannabis Medicine prescriptions. Once again I was devastated. This pushed Billy into a crisis situation with only three weeks supply left.
Once again scared for my little boy’s life I scoured the globe having been informed by the powers that be they would allow his GP to continue prescribing if I could source a Cannabis Medicine product that had been through clinical trials. Right now I can tell you that it was like looking for a needle in a haystack.
Once again I was a mum on a mission scouring the globe – that search led us to Canada.
Monday 5th June 2018
Again I found myself packing my little boys medical equipment, toys and clothes and heading for the airport.
Thanks to a leading paediatric neurologist, Children’s Hospital, Toronto Billy continued to have access to Cannabis Medicine.
Monday 11th June 2018
We flew back to Uk and landed at London Heathrow airport with a six month supply of Billy’s life saving medicine.
Billy’s medicine was confiscated by customs in a very tearful situation whereby a customs officer and myself stood crying together, looking at each other in disbelief as to the situation we both found ourselves in.
At that moment I knew the consequences for Billy – his life threatening seizures would most likely quickly return.
And true to my thoughts, on Friday 15th June 2018 – four days after his medicine was stopped abruptly, my little boy was rushed to London Hospital via an ambulance – he was in a full blown grand mal tonic clonic seizure that would not stop. My heart broke into a thousand pieces – I truly thought I was going to lose him. Billy was in a life-threatening situation.
Despite the best and honest efforts of the incredible NHS frontline staff it left them fighting Billy’s condition with both hands tied behind their back because the only medication that was going to be effective was locked in the vaults of the UK home office.
After what seemed like I had been sitting in the biggest longest waiting room of my entire life – losing my breath – feeling I would never catch it again – a forever panic attack feeling – my heart was dying , my soul screaming out “how can this be happening to my vulnerable boy?” his treating doctor entered the room. He whispered, touching my arm “I am going to get your little boys medicine back”
With the combined negotiations skills of our Foundation team and the treating doctor – my little boy’s medicine was returned the following morning – Saturday 16th June via taxi from the vault’s home office. He had gotten it back . His NHS funding was reinstated . Another UK first.
By Saturday evening Billy was starting to improve.
Sunday he had perked up enough to eat. Monday he was discharged – running through the main hospital door to greet the waiting world’s press. He made it. He had survived.
Tuesday 18th June 2018
The Home secretary announced in Parliament he had given Billy back his medicine and he was appointing Dame Sally Davis to research if indeed Cannabis had Medical benefits.
In eight days flat my brave boy had changed an unjust outdated 50 year old law, something many other individuals and organisations had tried to do and failed. He had made History. A little boy from County Tyrone, Northern Ireland managed to change a 50 year, outdated and unjust cannabis law in the UK.
Back to Canada
Fast forward October 2018 Billy’s seizures started to break through and after seeking urgent consultation with his doctor in Belfast we agreed I would return Billy to Canada so he could access an urgent consultation with a Cannabis Medicine expert.
November 2nd 2018 once again I found myself packing my Wizards medical equipment, toys , clothes into my car and heading to the airport.
After a number of tests and consultation the doctor came to the conclusion Billy had started puberty. It is not unusual for children who require Cannabis medicine to treat their epilepsy to have to be transitioned from one CMP formulation to another – his little body was evolving hence the epilepsy was evolving.
Sadly for Billy, the doctor in Belfast refused to continue to support prescription for due to new BPNA guidelines issued 1st November 2018 and due to no clinical trial data to support prescribing Cannabis Medicine to treat children with refractory epilepsy.
Unbelievably we were exiled again from our homeland again . I was completely and utterly devastated . To return Billy home safely and legally with medicine I had to find either an NHS Neurologist/Private Neurologist in the UK to support his Cannabis Medicine prescription.
Mum on a mission again – I lost count of how many nhs and private UK doctors I contacted staying up into the small hours of the morning night after night desperately trying to bring Billy home legally and safely.
It’s wasn’t until February 2019 after four months of exile that a doctor agreed to support Billy’s Cannabis prescription . We took an overnight flight and landed back on home soil 11th February 2019. We were home safely.
We continued to lobby the government to have Billy’s NHS funding reinstated for his life saving medicine – but no avail.
As you can imagine by this stage, we had exhausted every avenue and we ourselves were exhausted. With nowhere else to go, we entered into a long and tortuous legal process. What happened was a number of exhaustive court hearings with no positive result for Billy.
Each court hearing in Belfast was a 4 hour round trip, leaving the house by 6.30am and not returning to late evening. A long-winded tortuous ordeal for Billy.
Thankfully amidst it all , Matt Hancock’s advisors reached out stating that no family should have to go to court to avail of life-saving medicine.
This led to the set up of RESCAS, comprised of a group of eminent doctors. If an NHS pediatric neurologist feels that their patient is benefiting from medical cannabis via a private prescription or they have a patient that could benefit from medical cannabis they can refer the patient to RESCAS. From this, there is a discussion as to whether the patient has the medicine funded by the NHS.
Billy was the first patient to go through this process and have a positive outcome – NHS funding reinstated in October 2020.
Billy made history again, as the first (and only) patient in the UK after the new law change in 2018 to have whole-plant medical cannabis funded by the NHS.
It then took a further 6 weeks to have this process set up, with the importer and medical manufacturer of Billy’s medicine to receive payment from the NHS.
I am eternally grateful to Matt Hancock , secretary state and Robin Swann , Health Minister N. Ireland for enabling Billy to have access to RESCAS and to his amazing team of doctors that his NHS funding has been reinstated for a third time.
It is quite simply blowing my mind to watch my beautiful and innocent child who could never fake or pretend getting better show such great improvement using Cannabis medicine despite such an aggressive and devastating medical condition.
It has given him happiness. It has given him time.
It has provided him with a life outside of being drugged into a shell of a person seizing until he is blue
Amidst my battle to keep Billy alive every free second I have has been dedicated to talking to vulnerable chronically ill patients with a wide spectrum of conditions and supporting them . I have cried with them , I have been frustrated , I have negotiated, I have felt stupid and I have slumped over tired – but i look at Billy’s tiny face and I keep going . Billy’s journey has inspired me to become a tide that will raise all boats .
We must never ever let this happen to another patient. Because if we do their future will be our past.
Thank you to each and everyone of you who has come along with us on this journey. One day I hope we live in a world where all patients who need it , have access to this medicine and it will be an ordinary thing.
Until that happens, thank you for coming with us.
Thank you for loving Billy.