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 5 and trying numerous medications, Ketogenic Diet, Bailey had an EEG the Results came back with Lennox Gastaut Syndrome, Irratractable Form Of 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 repreive. But Bailey still had to go through grulling Medication regime of having loading doses of drugs every fortnight to try and get some sort of seizure control.But all these drugs came with horrific side affects, Aggression, Frustration, unable to walk,weight loss, Slurred Speach, hair loss, Rashes, oversized Gums, Sleepiness, drooling, 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 admitted into Intensive Care. The Hospital became our first home the List of drugs was running out and thats when we started to research CBD Oil.
It wasn't until one day we had to phone for another Ambulance 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 dont 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 wont come out and then Smack you back in Relaity 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 3 years ago, he's been taking CW 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 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 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, 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 affects again, hallucinations, sleepy, aggression, frustration, no interest in anything, his personality had disappeared again our Boy is not in the Room. CW Medication has plateaued for Bailey and we believe from researching and looking to cases all over the world that Full Extract Medication will give our Son enough seizure Control to give him his Life Back, ultimately save his Life, Everyday 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 everyday from seizures is something no child should ever see it has made him Anxious, Distant and unable to express his emotions, he wont 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. Ross resorts to making himself vomit daily 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 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 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, I don't want Ross to Feel anymore anguish or upset as a result and for Baileys condition to affect his future. Our Family doesn't have a Quality Of Life!
We NEED Access to Full Extract Medication because we have exumed all the pharmacutical medications, Bailey has a VNS impant, and tried the Ketogenic Diet. Since Bailey has been taking CW Medicine it has shown improvements on his EEG. This Medication is available on NHS although Neurologists will not prescribe Full Extract Medication due to restrictive guidelines and having no support or information regarding the Medication.
We are at the End of the Line after 15 years of taking Medication Bailey still hasnt got seizure control. 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 is everyday 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 Medicine can alleviate their condition and or give them a better quality of life for ever how long they have left or prolong a happier Life.
Our Neurology Team has refused to Prescribe Full Extract Medication despite the Law Change on 1 Nov 2018. So we have no option but to Raise Funds to get a private prescription with a private Clinic which is very costly but this is Baileys last Option there are no more Drugs left for him to try we have to try and give him his life back and hopefully give him better seizure control as the next seizure could take his Life or leave him unable to live A Life as he is now as the effects of the seizure could be irreversible.
Please Help Us Give Bailey A Life He Deserves To Live, We Haven't Got The Luxury Of Time, Epilepsy Waits For No One!
- Jonny Powell
- jayde monaghan
- Alex Hartnell
Organizer and beneficiary
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