Mission For Baileys Shakes Old
Donation protected
Our story
At 2 1/2 years old we woke to the sound of Bailey choking we phoned an ambulance and we were discharged being told it was a Febrile Convulsion. Unfortunately he had another seizure a few weeks later and after a night in hospital we were 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 which would throughout the day and night.
As the years passed we tried over 20 different medications and nothing would control the seizures, we were phoning an ambulance every week as Baileys rescue medication wouldn’t 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 an Intractable 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 reprieve. But Bailey still had to go through gruelling 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 effects, Aggression, Frustration, unable to walk, weight loss, Slurred Speech, 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 and the List of drugs was running out and that's when we started to research alternative medications and therapies.
It wasn't until one day we had to phone for yet another Ambulance as Bailey was having 100s of seizures, three lots of Rescue Medication at Home and 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 and it was the moment we'd been dreading, he sat us down and told us 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 was that Silence.....People are talking But all you hear is muffled sounds, Your Words won’t come out and then BANG your back into Reality and The Fight is On. Our only Hope was to go with our hearts and try the alternative medication and therapies we’d been researching.
By Some Miracle Bailey Woke up 3 days Later and asked for chocolate cake, that was the day we agreed as parents we would go to the end of the earth to find a treatment or medication which would give our boy his life back, It took a month to arrange the new medication as this had to purchased by us even though the law in the UK allows it but we still can't access it on the NHS, Baileys quality of Life has dramatically improved to the point where he hasn't had a hospital Stay since, 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 new medication he looked out of the window and said, I can See Trees, before he would stare into nothing, His Memory has improved on good days where he will remember people’s names which is a milestone for Bailey.
The Impact on Our Family is Immense Our youngest Son Ross who is now 15 years old has been gravely effected, 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 and this 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 over the years 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 too poorly to leave the house, he cannot except or comprehend why this is happening to us all and you can see the pain on his face. Bailey can have seizures throughout the day and Night and when he falls asleep the Seizures become more frequent and vicious so either Craig or Rachel (Mum & Dad) 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. Even simple things like day trips can be a distressing time as Bailey once had a seizure in the car and ended breaking his leg.
Bailey used to run everywhere and enjoyed life at a fast pace but as the seizures have grabbed hold of him over the years his mobility has become effected and the use of his wheel chair is more frequent. Due To Baileys Epilepsy it has also brought on other Disabilities that are very challenging for Bailey. He has Global Delays, Speech & Language Difficulties along with behavior & sensory Processing Issues. Poor Mobility is very frustrating for Bailey. Especially as he is such a determined young man. He need to use a wheelchair for long distance as walking tires him very easily. When he has a seizure they leave him unable to walk, talk or function & his muscle tone is gravely affected. We are always trying & looking for new innovations, adapted equipment, therapies so Bailey can thrive and enjoy living his best quality of life. We have slowed down all of the progressive effects of his condition by the purchasing of his private medication & speacialist equipment but this is at a huge cost to us as a family.
But what we do know is every day he has 100s of seizures and everyday those seizures can kill 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 in Bailey or any other Child or Human being when there is a medication out there to help them live a happier and prolonged life.
Please Help Us Give Bailey A Life He Deserves To Live, We Haven't Got The Luxury Of Time, Epilepsy Waits For No One!
At 2 1/2 years old we woke to the sound of Bailey choking we phoned an ambulance and we were discharged being told it was a Febrile Convulsion. Unfortunately he had another seizure a few weeks later and after a night in hospital we were 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 which would throughout the day and night.
As the years passed we tried over 20 different medications and nothing would control the seizures, we were phoning an ambulance every week as Baileys rescue medication wouldn’t 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 an Intractable 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 reprieve. But Bailey still had to go through gruelling 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 effects, Aggression, Frustration, unable to walk, weight loss, Slurred Speech, 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 and the List of drugs was running out and that's when we started to research alternative medications and therapies.
It wasn't until one day we had to phone for yet another Ambulance as Bailey was having 100s of seizures, three lots of Rescue Medication at Home and 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 and it was the moment we'd been dreading, he sat us down and told us 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 was that Silence.....People are talking But all you hear is muffled sounds, Your Words won’t come out and then BANG your back into Reality and The Fight is On. Our only Hope was to go with our hearts and try the alternative medication and therapies we’d been researching.
By Some Miracle Bailey Woke up 3 days Later and asked for chocolate cake, that was the day we agreed as parents we would go to the end of the earth to find a treatment or medication which would give our boy his life back, It took a month to arrange the new medication as this had to purchased by us even though the law in the UK allows it but we still can't access it on the NHS, Baileys quality of Life has dramatically improved to the point where he hasn't had a hospital Stay since, 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 new medication he looked out of the window and said, I can See Trees, before he would stare into nothing, His Memory has improved on good days where he will remember people’s names which is a milestone for Bailey.
The Impact on Our Family is Immense Our youngest Son Ross who is now 15 years old has been gravely effected, 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 and this 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 over the years 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 too poorly to leave the house, he cannot except or comprehend why this is happening to us all and you can see the pain on his face. Bailey can have seizures throughout the day and Night and when he falls asleep the Seizures become more frequent and vicious so either Craig or Rachel (Mum & Dad) 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. Even simple things like day trips can be a distressing time as Bailey once had a seizure in the car and ended breaking his leg.
Bailey used to run everywhere and enjoyed life at a fast pace but as the seizures have grabbed hold of him over the years his mobility has become effected and the use of his wheel chair is more frequent. Due To Baileys Epilepsy it has also brought on other Disabilities that are very challenging for Bailey. He has Global Delays, Speech & Language Difficulties along with behavior & sensory Processing Issues. Poor Mobility is very frustrating for Bailey. Especially as he is such a determined young man. He need to use a wheelchair for long distance as walking tires him very easily. When he has a seizure they leave him unable to walk, talk or function & his muscle tone is gravely affected. We are always trying & looking for new innovations, adapted equipment, therapies so Bailey can thrive and enjoy living his best quality of life. We have slowed down all of the progressive effects of his condition by the purchasing of his private medication & speacialist equipment but this is at a huge cost to us as a family.
But what we do know is every day he has 100s of seizures and everyday those seizures can kill 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 in Bailey or any other Child or Human being when there is a medication out there to help them live a happier and prolonged life.
Please Help Us Give Bailey A Life He Deserves To Live, We Haven't Got The Luxury Of Time, Epilepsy Waits For No One!
Organizer and beneficiary
Rachel Rankmore
Organizer
Rachel Rankmore
Beneficiary