Never give up – Saving Billy by PSY-23

For most of us there will be no greater moment than witnessing the birth of a child. Seeing life begin and trying to make sense of all the overwhelming emotion that comes with it is something that has a profound effect on anyone, so it’s no surprise that we use this feeling to define what it is to love unconditionally.

Becoming a parent is a truly magical experience and from the first knowledge of conception through to the end of your time on this Earth one thing is clear: you would do anything to make sure that your child is protected, even if other people try to tell you that you’re wrong. This is the story of one mother’s fight to save her child’s life.

Back in 2005, a little boy named Billy was born in Northern Ireland. Despite the fact that he arrived over a month early, Charlotte Caldwell saw nothing less than a perfect child with stunning eyes and fell even more in love with him than she had the whole time she carried him. Like many other babies who are born prematurely, Billy had to remain in hospital for monitoring during the first few weeks of his life, but that didn’t make any difference to his doting mother who dedicated herself to learning about how to best help her tiny miracle get stronger day-by-day.

After being discharged, life at home became a wonderful blur of love, wet wipes, feeding and sleeping as Billy settled into his more comfortable surroundings. Regardless of his early arrival, he was growing well and giving everyone a run for their money, like any child his age. His mother was overjoyed to have him back in the roost and took great pride in being his guardian and nurturer. Little did she know that less than six months later her whole world would be shaken to its core by an invisible threat.

In the run up to Christmas that same year, Charlotte noticed something strange. Whilst checking up on little Billy sleeping in his crib, she was surprised to see that his eyes were open. Initially thinking that he must have woken up to feed, her instincts told her that something wasn’t right when she noticed that he was not moving his arms and legs like an infant usually would. Instead he was lying incredibly still. Instinctively she reached for him and held him close to her before sitting him up to see if he was responsive. Her worry turned relief when he burped and began to move his arms and head was immense, but over the next few minutes this pattern repeated itself. Each time she managed to get Billy to respond and managed to ‘snap him out’ of his staring state, but it wasn’t long before he became unresponsive again. She became increasingly worried and soon came to the decision that this couldn’t be left to chance; she put Billy in the car and drove straight to the local hospital.

Initial examinations didn’t show up anything to explain Billy’s situation, so he was sent to the main hospital by ambulance. On the way his condition suddenly deteriorated. For his petrified mother, seeing Billy suddenly gripped by powerful, terrifying convulsions left her at her wit’s end. Paramedics rapidly treated him in the ambulance with oxygen and injections to help stabilize him, a medical team met them at the hospital doors and then Billy was taken away for further treatment while his poor mother had to wait and sit and wonder whether or not Billy was going to reach his first Christmas. Over the next six hours she was drip-fed information as it became available and discovered that the doctors were still fighting to stop his seizures which they believed he was suffering due to a Status Epileptic Seizure. After an extensive attempt to help Billy, they managed to stop the seizure and let Charlotte in to see him. Her heart almost broke when she saw him lying unconscious, covered in wires and tubes with a machine breathing for him. The doctor explained that they had never seen such a severe seizure in such a small child; the outlook was less than promising and despite all their efforts the doctor warned that Billy was unlikely to survive many more episodes of this magnitude. All Charlotte wanted to do was cradle Billy in her arms and make everything alright, but even holding him was impossible.

Sadly, the doctor’s predictions proved to be accurate and Billy continued to lapse into increasingly aggressive seizures over the next three days. Despite trialing various anti-epilepsy medicines, nothing seemed to halt the ravaging attacks on this tiny little child and the decision was made to move him to the Royal Victoria Hospital, Belfast, where he would spend more than three months. Almost two months after the move, Charlotte was approached by a clinician who had a heart-breaking prognosis: there was little hope and the best thing for Billy was to let him die peacefully by giving him morphine and allowing him to fall asleep forever. Instinctively, Charlotte begged for a second opinion or other alternatives, only to be told that there was nothing more that could be done for her son…she reluctantly began to wonder if Billy’s fight was almost over. He was discharged from hospital and allowed to go home with the advice that it was highly unlikely that he would see his first birthday.

Bringing a child home after a long stay in hospital should be a cause for celebration, but for Charlotte it was tinged with the fear of uncertainty. She spent every moment with Billy by her side, constantly wondering if the next seizure would be too much for him to take, and nursed him through up to 50 seizures each and every day. Most weeks he would slip into the Status Epileptic Seizure and be rushed back to hospital in the hope of stabilizing his condition, yet with every recovery something became clearer and clearer in Charlotte’s heart: Billy was a born survivor and she was his sworn protector.

At every opportunity Charlotte began her own research into Billy’s condition. Although she still only sees herself as simple mother from a little village, her dedication and devotion to her son knew no bounds. Medicines, treatments, clinics, doctors, journals, books…website after website was trawled and dissected in the search for anything which could help her understand what Billy was going through. Shockingly, she discovered that the clinician who had previously suggested euthanasia was not even qualifi ed to comment on such a severe case of epilepsy as he was not an Epitologist and therefore not an expert in the fi eld of epilepsy. Suddenly, she knew that her fi ght had to continue regardless of what anyone may tell her. Her search for help led her to the other side of the Atlantic where she found a renowned Paediatric Epitologist, Professor Nordli, in Chicago, IL. Without hesitation she made contact with him and sent every last piece of information she had about Billy’s condition. He agreed to help her, but she knew that treatment in America would come at a crippling financial cost.

In summer 2007, Charlotte started a fundraising campaign to help Billy get treatment in Chicago. In total she needed to raise £250,000 to make it possible and, in spite of kind donations they had already received from friends and family, there was a long way to go. Thankfully, it seems you can still rely on the kindness of strangers and by September 2007 Billy was on his way to Chicago.

Within a week Billy had been examined, tested and assessed multiple times and Professor Nordli determined that some essential changes had to be made: Billy’s cocktail of medications had to be reduced down by weaning him off those which were deemed unnecessary; his Ketogenic diet had to be re-evaluated to ensure that it was most effective; Billy would need to be given intense physical therapy once stabilized to help him gain more control over his muscles, balance and communication (his body had been brutally ravaged by the medications and seizures meaning that he had not developed in the same way as many children would by his age). Charlotte cried with joy when she was given the news that the tests had shown that there was hope for Billy; the battle had reached a turning point and now it was about helping him to recover more than it was about simply keeping him alive.

After the course of treatment began, Billy had no seizures at all for four months. He was more rested and far more comfortable, yet he still had a long way to go. Due to severe brain damage caused in the first few months of his life, he was immobile without support and didn’t have the energy or muscle control to engage with his environment. Over the next two years he was given intensive physical therapy to help him build muscle mass, develop control over his hands and feet and begin to explore the world around him that he had only been able to watch before. By September 2009, the family had insufficient funds to remain in Chicago and moved to Oxford to continue his therapy over the next year and a half. It seemed that Billy was finally on the road to recovery and epilepsy no longer dominated his existence. However, for Charlotte, Billy and the rest of his loving family there was still a hazardous journey ahead of them.

For almost eight years Billy had practically no seizures. His balanced diet and effectively dosed medication kept him stable and helped him to enjoy a more normal life. In 2012 he was diagnosed with autism, which meant that he was unlikely to develop a high level of verbal communication, but he was able to engage with his mother and become more of a little boy than ever before. It seemed like epilepsy’s vice grip had all but vanished from the life of the Caldwell’s, until the summer of 2016 when he was suddenly struck by a savage seizure that signaled his condition was back with a vengeance. Once again, Billy was at the mercy of his condition and his doctors were at a loss when it came to treating him, so his mother reached out to the man who had saved his life before. Professor Nordli agreed to see him and, after some incredible fundraising efforts, Billy was flown to Los Angeles to be treated at the professor’s new place of work. As before, his incredible doctor found the root cause of the problem and indicated that he was confident that he could treat him, yet this time it came at a heavy price: Billy would potentially have to lose half of his brain. While this would hopefully prolong his life and ease his suffering, it would also lead to Billy potentially losing his memory and perhaps cause additional problems as he grew older. He took Charlotte to one side and told her that there was another possible treatment which could help Billy, but it had not yet been fully tested for this condition: medicinal cannabis.

Charlotte saw that this was a ray of hope, but she wondered how cannabis could be a good thing. She knew that there had been some reports of it being used by people to treat different ailments, yet it was still deemed as an illegal substance back in her own country. Everyone she spoke to seemed to have a different opinion and she found that some people found it impossible to see that this wasn’t a case of just getting her son getting high. Undeterred, Charlotte and Billy went to meet with Dr. Allan Frankel at GreenBridge Medical to see what he could do. Dr. Frankel prescribed Billy a whole-plant extract with a high CBD content and minimal THC to ensure that he didn’t suffer from any psychoactive effects. After the initial treatment, they focused on increasing his dose by fractional amounts over eight months until it had the required effect and helped to balance out Billy’s condition. The CBD made a huge difference in Billy’s life and the whole family were overjoyed with his progress, however they couldn’t stay in Los Angeles indefinitely and Charlotte’s greatest fear became what to do once they had to return home.

Returning to her ever trusty pal, Google, Charlotte scanned through the search results until she found someone who may be able to help. She didn’t hesitate to contact him and explained her son’s situation and incredible journey; she provided evidence from a range of people, including Billy’s life-long GP and the doctor informed her that he felt confident that there was a case for providing Billy with CBD on prescription, even though it had never been done before in Northern Ireland. After this, the wheels were set in motion and Charlotte was able to take her son home with the hope that he would continue to get his miracle medication. In April of this year, Billy received his first prescription in a landmark moment for the whole of the United Kingdom and Ireland and the difference it has made to his life is staggering. Not only have his seizures been reduced to only a few occurrences in a month (and sometimes no seizures at all), but Billy has been able to come on leaps and bounds in terms of his mobility and overall standard of living. There is no doubt that Billy had always been born to battle and, finally, his proud mother could walk alongside her amazing son and show the world how far he had come. But they didn’t stop there.

Although cannabis is illegal in the UK, CBD has recently been reclassified as a medicine by the Medicines & Healthcare Regulatory Agency (MHRA). After returning to Northern Ireland, Billy was prescribed medication in the form of CBD oil and now uses oil made by 710 Holdings MME which has helped to maintain control of his epilepsy. In celebration of Billy’s incredible fight to survive, they have honored him by naming the CBD oil ‘Billy’s Bud’. What’s even more incredible is that Billy’s battle has caused an important debate to reignite in the UK and beyond: should more be done to research into the potential benefits of cannabis as a medicine instead of demonizing it as a dangerous drug? Charlotte’s tireless efforts to save her son have meant that she has engaged with politicians, medical professionals, cannabis pioneers and normal everyday people across the globe and Billy’s story has inspired many to rethink the way they view cannabis. Despite her being a relative newcomer to the cannabis scene, she has managed to achieve the incredible. In September 2017, Charlotte Caldwell organized the first ‘Billy’s Bud Fest’ in her hometown to help celebrate Billy’s success and raise awareness of how CBD can be beneficial for people with all kinds of conditions. We can only hope that this truly inspiring story continues to help make waves as we all fi ght the good fi ght to see a real change for the better.

Charlotte Caldwell has achieved the incredible due to her tenacity and devotion and above all else she remains incredibly humble to this day. She puts it best when she quotes something her grandmother told her a long time ago: “Never underestimate the power of a mammie’s love.”

We wish Billy, Charlotte and his family all the best for the future.

Sources: www.billysbud.com www.greenbridgemed.com www.710holdingsmme.com “

Originally published in Weed World Magazine Issue 131