Rachel, Craig, Ross & Bailey

This is Our Story,   The Williams'  Mission For Baileys Shakes.

At 2.5 years old we woke to the sound of Bailey choking and we telephoned an ambulance. They diagnosed a Febrile Convulsion. These Convulsions continued to happen. We were then told he had Epilepsy. From there 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. Nothing would control the seizures and we were calling an ambulance weekly as Baileys rescue medication would not stop the seizures. They were relentless.  By  age 7, and trying numerous of medications and a Ketogenic Diet, Bailey had an EEG. The results were; Lennox Gastaut Syndrome, Intractable Epilepsy, Drug Resistant. EEG recorded abnormal brain activity every 2.5 seconds.  From this diagnosis Bailey had a Vagal Nerve Stimulator Implant which stopped the small absent & head-drop seizures, giving a tiny reprieve.  But Bailey still had to go through a gruelling medication regime of having loads of doses of drugs every fortnight to try and obtain some sort of seizure control. However, all of these drugs induced horrific symptoms;  aggression, frustration, inability to walk, weight loss, slurred speech, hair loss, rashes, oversized gums, sleepiness, hallucinations, and the list endlessly continues.

 Bailey has been admitted to hospital countless times, drugged up with Emergency Medication. His seizures were relentless, which resulted in him being admitted into Intensive Care. The Hospital became our first home and the list of drugs were running out. At that point is when we started to research CBD Oil. 

It wasn't until one day we had to phone for another ambulance when Bailey was having 100’s of seizures and three lots of Rescue Medication. We could not control the seizures at home. At the hospital they loaded him up with a cocktail of drugs and nothing was stopping the seizures. 

He was not responding to anything. 

His body lay in bed limp unable to function on its own.  

Bailey’s Neurologist came to give us an update. 

The moment we'd been dreading. 

The Neurologist told us that there was no more medication left to try. That we don’t know if Bailey is going to wake up as the same boy, if at all.......There it is, That Silence.....People are talking But all you hear is muffled sound. Your words won’t come out. And then SMACK; you’re back in 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 Charlottes Webb oil 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 recent). He is able to speak a bit more clearly, has improved balance and 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 peoples 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. His seizures are more frequent resulting in him sleeping most of the day, having no quality of life.  The medication increases and changes have given him more side affects again; hallucinations, sleepiness, aggression, frustration, no interest in anything, his personality had disappeared again. 

Our boy is not “in the room.”  

We  believe Cannabis Oil will give our son enough seizure control to give him his life back and ultimately save his life. Everyday he is at Risk of SUDEP (Sudden Unexpected Death in Epilepsy). 

The Impact on our family is immense. Our son, Ross who is 11 years old, has been gravely affected. He suffered from Absent Seizures as a toddler but is now seizure free.  But seeing his brother suffer  everyday from seizures is something no child should ever see. It has made him anxious, distant, and 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 we’ve 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 background 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 to poorly to leave the house.  Bailey has seizures throughout the day, during the night, and when he falls asleep the seizures become more frequent and vicious. Craig or I have to sleep in with him because he may not recover from a seizure, he could suffocate and die. A lot of the time our family life is split into two parts of the house with either parent with Bailey or Ross.  We cannot enjoy trips away as Bailey has had seizures in the car and broken bones due to the severity and strength of the seizures. He cannot 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. Its very distressing for anyone to see someone having a seizure and I do not want Ross to Feel anymore anguish, or upset as a result. 

We NEED Access to Medicinal Cannabis Oil because we have exhumed all the medications. Bailey has a VNS implant, and tried the Ketogenic Diet. Since Bailey has 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 hasn't been given any information with regards to the recent Panel Remit or Home Office Announcement. No guidelines have been issued. How can we expect our clinicians to take whole responsibility in applying for a Licence for Cannabis Oil if they know nothing about the medicine, doses, which product to prescribe, how to import it? 

We need  Cannabis Oil just as equally as those that have given a life time licence. My child is equally at risk as they are. We do not have the means to travel abroad for treatment and then return to apply for a licence.  

We are at the end of the line. After 14 years of taking medication Bailey still doesn’t have seizure control.  We don’t know when the next seizure will take his life. It could be now, as I am writing this or tomorrow, next week, it is a ticking time bomb.

WE DO NOT HAVE THE LUXURY OF TIME !

 

 

BASIA ZIENIEWICZ