This is Our Life, The Williams’
At 2 1/2 years old we woke to the sound of Bailey choking we phoned an ambulance, they diagnosed a Febrile Convulsion. These Convulsions continued to happen we were then told he had Epilepsy. From here on Baileys Seizures become more frequent and violent he was having Tonic Clonic Seizures, then they progressed into Drops Seizures, Absent Seizures, Myoclonic Jerks, Partial Seizures all these happening throughout the day and night.
As the years passed we tried different medications as nothing would control the seizures, we were phoning an ambulance every week as Baileys rescue medication would not stop the seizures they were relentless. By Aged 7 and trying numerous medications, Ketogenic Diet, Bailey had an EEG the Results came back with Lennox Gastaut Syndrome Irratractable Form Epilepsy, Drug Resistant. EEG recorded abnormal brain activity every 2.5 seconds. From this diagnosis Bailey had a Vagal Nerve Stimulator Implant, this stopped the small absent & head Drop Seizures which gave a tiny reprieve. But Bailey still had to go through grueling Medication regime of having loading doses of drugs every fortnight to try and get some sort of seizure control .But all these drugs came horrific side, Aggression, Frustration, unable to walk, weight loss, Slurred Speech, hair loss, Rashes, oversized Gums, Sleepiness, hallucinations the list is endless.
Bailey has been admitted to Hospital Countless times drugged up with obscene amounts Emergency Medication, as his seizures were relentless, which resulted him being intubated and admitted into Intensive Care. The Hospital became our first home the List of drugs was running out and that is when we started to research CBD Oil.
It wasn’t until one day we had to phone for another Ambulance which was a weekly occurrence Bailey was having 100s of seizures, three lots of Rescue Medication at Home we could not control the seizures. He went into hospital they loaded him up with a cocktail of drugs nothing was stopping the seizures, he was not responding to anything, his body lay in bed limp unable to function on its own. Our Neurologist came to give us an update the moment we’d been dreading he told us that there was no more medication left to try, we don’t know if Bailey is going to wake up the Same Boy if at all…….There it is that Silence…..People are talking But all you hear is muffled sounds, Your Words won’t come out and then Smack you back in Reality and The Fight is On. Our only Hope was to try Charlottes Webb CBD Oil.
By Some Miracle Bailey Woke up days Later that was two years ago, he’s been taking CW CBD Oil with no THC ever since. Baileys quality of Life has improved to the point where he hasn’t had a hospital Stay, No Ambulances, No Loading Doses of Drugs and only a handful of Rescue Medication (which is Recently) a reduction in pharmaceutical drugs. He is able to speak a bit more clearly, improved Balance, coordination when not having seizures. He has Clarity he is aware of objects the first car ride after a few days of taking the oil he looked out of the window and said I can See Trees, before he would stare into nothing, not even know his surroundings or take anything in. His Memory has slightly improved on good days where he will remember people’s names which is a milestone. But and there’s always one of those during recent months Bailey has been deteriorating, he’s had another Battery replaced in his VNS and we’ve had to start juggling his medication around, as his seizures are more frequent resulting in him sleeping most of the day and then in turn the pharmaceutical drugs also sedating him, having no quality of life. The pharmaceutical medication increases and changes have given him more side effects again, hallucinations, sleepy, aggression, frustration, no interest in anything, his personality had disappeared again our Boy is not in the Room. CBD oil has plateaued for Bailey and we believe from researching and looking to cases all over the world that Full Extract Cannabis Oil will give our Son enough seizure Control to give him his Life Back, ultimately save his Life, Every day he is at Risk of SUPDEP.
The Impact on Our Family is Immense Our Son Ross who is 12 yrs old has been gravely affected he suffered from Absent Seizures as a toddler but is now seizure free. But seeing his brother suffer every day from seizures is something no child should ever see it has made him Anxious, Distant unable to express his emotions, he won’t cry or discuss how poorly his brother is, he is scared and fears that we might not be here in the morning when he wakes up, as he has been left with relatives when weve had to take Bailey into Hospital. Ross seems to get side tracked when we have to Care for Bailey we often see him in the back round looking in on The seizure that is hurting his brother. Many Trips have been cancelled and the simplest daily routines are a struggle as Bailey has been too poorly to leave the house. Ross resorts to making himself due to the stress of seeing what Bailey and his parents go through on a daily basis he cannot except or comprehend why this is happening to us all it is all too painful to face. Bailey has seizures throughout the day, during the Night and when he falls asleep the Seizures become more frequent and vicious so with Craig or I have to sleep in with him because he may not recover from a seizure, he could suffocate and die. So a lot of the time our Family Life was split into two parts of the house with either parent with Bailey or Ross. We couldnt enjoy trips away as Bailey has had seizures in the car and broken bones due to the severity and strength of the seizures, he couldnt walk far as he is getting tired from just from walking a short distance or doing just the simplest tasks. Ross doesn’t have friends over as I cannot take responsibility for another child as I have to tend to Bailey 24/7. It is very distressing for anyone to see someone having a seizure, I don’t want Ross to Feel anymore anguish or upset as a result and for Bailey’s condition to affect his future. Our Family doesn’t have a Quality Of Life!
We needed Access to Medicinal Cannabis Oil because we have exhumed all the medications, Bailey has a VNS implant, and tried the Ketogenic Diet. When Bailey had been taking Charlottes Webb CBD Oil it has shown improvements on his EEG. This Medication has to be available more easily and as quickly as possible our Neurologist will not prescribe FECO due to the very restrictive BPNA guidelines and them also recommending they do not prescribe please see attached letters from Chief Executive of UHW& our second opinion in the form of an Adult Neurologist at the same hospital.
We needed Cannabis Oil just as Equally as those that had been given an NHS prescription too under the Old Licensing Panel, my child is equally at risk as those are, we did’t have the means to travel abroad for treatment it would be reckless for us to do so as it would have been unsafe for Bailey to travel & more added stress & anxiety for the whole family, as Dad would have to stay home( as he works full time) with our younger son Ross and I would have to travel to another country, with no Support, Family, knowledge of country or surroundings with an extremely sick child. We would also have to bring the Medicine back into the country illegally we do not at this point want to break the Law, we are a hardworking family who are abiding citizens.
Our Neurologist of 10 years has refused to prescribe Bailey Full Extract Cannabis Oil, we have filed a complaint to the NHS Trust and another 2nd opinion has been arranged he has seen Bailey and looked over his case and the guidelines that have been written and he has also refused to prescribe Bailey. We have also had a conversation with Head Neurologist at our hospital and she also said that she was unable to prescribe as she helped write those guidelines, so I had replied that those guidelines stated that they could prescribe Tilray & Bedrocan Products an and felt she could not go back on them now. She didn’t even know that this part of the guidelines had been updated even though she had various meetings with BPNA. She also informed us that if one neurologist said no to prescribe then all other would say no too, so a second opinion was arranged.
We have been offered Epidiolex but the CBD oil Bailey was on is far better grade than Epidiolex this is not the same as Full Extract Oil either, Bailey would most definitely had deteriorated if changed over to Epidiolex. Neurologist are being misinformed and are being threatened with losing their jobs preventing them to do “What is in the Best Interest of The Patient”.
Bailey has tried over 20 pharmaceutical drugs, some unlicensed and not tested for use in children, with horrific side effects, tried the Ketogenic Diet, has a VNS and still no seizure control, he is not a candidate for Brain Surgery as his seizures are generalized, so according to the BPNA Guidelines, Bailey should be prescribed Full Extract Cannabis Oil but he is being denied. Neurologist and Specialists Clinicians are having to watch the horrific deterioration in the patients they have treated for many years, you are making them go against Their Oath “First Do No Harm”.
We were at the End of the Line after 15 years of taking Medication Bailey still didn’t have any seizure reduction or quality of life. Each day we grieve because the next seizure could take his life it could be now as I am writing this or tomorrow, next week, it is a ticking time bomb. But what we do know every day he has 100s of seizures and everyday those seizures kill brain his Brain Cells, taking a piece of our son away from us and away from this world. We cannot bear to see the deterioration any longer not in Bailey or any other Child or Human being when Full Extract Oil could elevate their condition and or give them a better quality of life forever how long they have left or prolong a happier Life.
Since last March 2019 we have been fundraising through our local community and through Bailey’s 1400 followers on his Facebook Page. We have raised just under 20k+ which we used to fund a Private Prescription for Medical Cannabis. We made an Appointment on 24th June 2019 with a Private Neurologist who prescribed Medical Cannabis for Bailey.
However we do not have an endless pot of money, the money we have been donated will run out exceptionally quickly as a private prescription very expensive as they have to be imported. We should not have to beg steal and borrow to pay for a prescription that is legally allowed to be prescribed on NHS. If a private neurologist is willing to prescribe, what is the difference in an NHS neurologist prescribing medical cannabis?
We have been fighting for over two years now leaving our sick children to attend Parliamentary Debates, presenting petitions to No 10, constantly writing letters to MPs updating Social Media, speaking to Radio Stations, News, Media and it is taking its toll on the whole Family we are under extreme stress already looking after Bailey who is very sick and his condition is taking over his body and Life. The next seizure could take his life or leave him with no quality of Life. In fact his Neurologist has said Bailey has no Quality Of Life it has gone, we are not prepared to let our Son Deteriorate any further and Die because NHS wouldn’t provide him with an NHS prescription for Medical Cannabis which is his last option and chance of A Life.
We now have a Private prescription for Medical Cannabis which we have to fundraise basically Beg, Steel & Borrow to pay for. We cannot sustain the £700 to £2000 per month costs & we have also gone abroad and brought the Medical Cannabis into the country illegally to save money. Basically being made to commit a Crime to Keep Our Child Alive Safe & Well on a Medicine that has been Legally Allowed to be Prescribed on the NHS since 2018. There should not be a Price on Our Children’s Lives.
Bailey is Living his Best Life at home having 1 to 2 seizures a day as appose to 100s a day and this is with reducing one of his pharma drugs. His is able to play with his Games/Toys, Interact, Communicate, Eat, Walk, Enjoy his surroundings, attend School. His Personality has returned and Our Bailey is on his way back to Us. He is no longer just exisiting in a vegative state having horrific side affects from Emergency rescue Drugs.