Help "Radar" get the further training he needs
Donation protected
Thank you for taking the time out of your busy lives to sit down, and pause for a moment to read this.
What you read, may make you think, or just make you go and hug you child or loved one. Or, (and this is what we hope) it may make you enroll in a first aid course to learn first aid skills which may save a total stranger. That stranger could potentially be a child/adult who suffers Epilepsy, it could even be our son Ben.
You see our son Ben, like many other kids/adults who suffer Epilepsy, is just like any other kid or adult. He is a happy little boy who wants to have fun, play with his friends and do what everyone else does. Ben has developed a love for super heroes that is heavily encouraged by his uncles (in the day of marvel, what boy hasn't?). Ben had his first tonic-clonic seizure at 22 months of age in 2013 (Ben is now 7) on the floor of my mother-in-law's kitchen. God Bless her she was an absolute rock when it happened, she stayed calm and used her first aid training that she had received at work (the expensive tab of red wines afterwards was definitely worth it haha), had it been me, I wouldn't have know what to do as I didn't know anything about Epilepsy (boy o boy was I about to learn really fast). The longest seizure Ben has suffered since then was 18 minutes of shaking. I tell you, seeing your child have a seizure for 18 minutes, as a parent, you would give anything to trade places. Seeing their eyes rolled back, shaking uncontrollably, the unknown pain they are going through, and, not to mention the damage that is being caused to their brain. However the side effects from this seizure usually last for hours to days, and affect everyone around them. With Ben, he may loose the ability to do something as simple as hopping, which is something every 7 year old should be able to do.
As a a parent how the hell do you protect against this?
You can't!! That is what scares the living daylights out of us. There is no product on the market today that can save the live of an Epileptic who has Absent Seizures. More people die from SUDEP (Sudden Unexplained Death in Epilepsy Patients) than in house .
How often do you hear on the news that someone has passed away in a house ?
When was the last time you heard some passed away from SUDEP?
The only thing that will help Ben have the full life where he can do what any growing boy wants to do, the freedom to go to his friend's house by himself, is an medic alert/seizure dog. These dogs are highly trained, which takes approximately 2 years.
Unfortunately there is no organisation based in W.A. which provides such dogs. Which is ridiculous as there are currently 26,000 epileptics in W.A. Alone. More people suffer from Epilepsy than Blindness, Motor Neurone Disease, Muscular Dystrophy and MS combined. We would have to fly a dog and trainer over from the eastern states, if we are lucky enough to be accepted into a program. The cost for someone living on the east coast for one is these dogs is approximately $30,000 over two years of training alone, so our costs will be higher than this. There is evidence from studies and use in America, that one of these dogs should, once bonded with their handlers (the seizure sufferer), minimize the risk to the handler of a seizure through ensuring their safety, as well as carrying the appropriate emergency medication and information.
Now for the bad news, we want to get this dog for our son, but, in 2014, I (Ian, Ben's dad) had two strokes, developed Chronic Fatigue Syndrome, and, lost 57% of my vision. I now have the day to day struggle of chronic body pain and chronic migraines, which means, I just cannot work. I have trouble focussing on doing the washing and vacuuming the floors on the same day, let alone what is required when you are working. The silver lining (because my wife says there is always a positive), I can take Ben to all of his therapy appointments (thankyou to google calendar and all of the reminders in my phone), which means my wife is able to work full time as a nurse, and study part-time to be a primary school teacher (she is nuts right?).
***Update***
We have been lucky enough to raise enough money to purchase "Radar" who is 10 weeks old now and is doing fantastically well. He is bonding well with Ben and is loving his training. He obviously still has a long way to go and it is going to still take a large amount of money to do this training. So even if you are able to spare the cost of a cup of coffee would be amazing.
Ben also also been diagnosed with a rare genetic condition called 22q11.21 duplication syndrome which currently presents in more than 100 people worldwide the latest study earlier this year has said. Pretty scary that only more than 100 people in the world potentially has something considering the population.
If you want to find out more info about our awesome Super Ben please check out http://benssupershakeshakejourney.blogspot.com .
Thank you for taking the time out of your busy days to read this at the very least if you can share this far and wide to maybe just safe the life of an Epileptic then I will be a happy father.
Warm wishes
Bens Parents
Jodi and Ian
What you read, may make you think, or just make you go and hug you child or loved one. Or, (and this is what we hope) it may make you enroll in a first aid course to learn first aid skills which may save a total stranger. That stranger could potentially be a child/adult who suffers Epilepsy, it could even be our son Ben.
You see our son Ben, like many other kids/adults who suffer Epilepsy, is just like any other kid or adult. He is a happy little boy who wants to have fun, play with his friends and do what everyone else does. Ben has developed a love for super heroes that is heavily encouraged by his uncles (in the day of marvel, what boy hasn't?). Ben had his first tonic-clonic seizure at 22 months of age in 2013 (Ben is now 7) on the floor of my mother-in-law's kitchen. God Bless her she was an absolute rock when it happened, she stayed calm and used her first aid training that she had received at work (the expensive tab of red wines afterwards was definitely worth it haha), had it been me, I wouldn't have know what to do as I didn't know anything about Epilepsy (boy o boy was I about to learn really fast). The longest seizure Ben has suffered since then was 18 minutes of shaking. I tell you, seeing your child have a seizure for 18 minutes, as a parent, you would give anything to trade places. Seeing their eyes rolled back, shaking uncontrollably, the unknown pain they are going through, and, not to mention the damage that is being caused to their brain. However the side effects from this seizure usually last for hours to days, and affect everyone around them. With Ben, he may loose the ability to do something as simple as hopping, which is something every 7 year old should be able to do.
As a a parent how the hell do you protect against this?
You can't!! That is what scares the living daylights out of us. There is no product on the market today that can save the live of an Epileptic who has Absent Seizures. More people die from SUDEP (Sudden Unexplained Death in Epilepsy Patients) than in house .
How often do you hear on the news that someone has passed away in a house ?
When was the last time you heard some passed away from SUDEP?
The only thing that will help Ben have the full life where he can do what any growing boy wants to do, the freedom to go to his friend's house by himself, is an medic alert/seizure dog. These dogs are highly trained, which takes approximately 2 years.
Unfortunately there is no organisation based in W.A. which provides such dogs. Which is ridiculous as there are currently 26,000 epileptics in W.A. Alone. More people suffer from Epilepsy than Blindness, Motor Neurone Disease, Muscular Dystrophy and MS combined. We would have to fly a dog and trainer over from the eastern states, if we are lucky enough to be accepted into a program. The cost for someone living on the east coast for one is these dogs is approximately $30,000 over two years of training alone, so our costs will be higher than this. There is evidence from studies and use in America, that one of these dogs should, once bonded with their handlers (the seizure sufferer), minimize the risk to the handler of a seizure through ensuring their safety, as well as carrying the appropriate emergency medication and information.
Now for the bad news, we want to get this dog for our son, but, in 2014, I (Ian, Ben's dad) had two strokes, developed Chronic Fatigue Syndrome, and, lost 57% of my vision. I now have the day to day struggle of chronic body pain and chronic migraines, which means, I just cannot work. I have trouble focussing on doing the washing and vacuuming the floors on the same day, let alone what is required when you are working. The silver lining (because my wife says there is always a positive), I can take Ben to all of his therapy appointments (thankyou to google calendar and all of the reminders in my phone), which means my wife is able to work full time as a nurse, and study part-time to be a primary school teacher (she is nuts right?).
***Update***
We have been lucky enough to raise enough money to purchase "Radar" who is 10 weeks old now and is doing fantastically well. He is bonding well with Ben and is loving his training. He obviously still has a long way to go and it is going to still take a large amount of money to do this training. So even if you are able to spare the cost of a cup of coffee would be amazing.
Ben also also been diagnosed with a rare genetic condition called 22q11.21 duplication syndrome which currently presents in more than 100 people worldwide the latest study earlier this year has said. Pretty scary that only more than 100 people in the world potentially has something considering the population.
If you want to find out more info about our awesome Super Ben please check out http://benssupershakeshakejourney.blogspot.com .
Thank you for taking the time out of your busy days to read this at the very least if you can share this far and wide to maybe just safe the life of an Epileptic then I will be a happy father.
Warm wishes
Bens Parents
Jodi and Ian
Organizer
Dobb Y Williams
Organizer
Perth WA
