Narcolepsy: Ethan's Nightmare
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Why are we fundraising?
Imagine that you have stayed awake for 48-72 hours. Can you imagine how you would feel? Exhausted, a headache, ‘foggy’ thinking, unable to function, tired beyond belief? Well that is how suffers of Narcolepsy feel ALL the time.
My 16 year old son Ethan, was diagnosed with the rare medical condition of Narcolepsy when he was just 14 years old although he had had symtoms for many years before. It is still not known what causes Narcolepsy however it is believed to be a neurological condition. There can be a genetic component to Narcolepsy (Ethan has the gene) and it is thought that perhaps it can be brought on by trauma. There is no cure which means Ethan will live with this debilitating condition for the rest of his life.
You might have seen characters with Narcolepsy in movies where they suddenly fall asleep and then just wake up and are fine. Narcolepsy in real life is very different. On an average day for Ethan, he will sleep at least 16 hours and often more – sometimes up to 26 hours! We hear a lot of people say things like ‘wow, it must be great to get that much sleep’ but it’s about so much more than simply getting a lot of sleep.
When you and I sleep, we go through sleep cycles during which time our bodies repair, rejuvenate and dream amongst other things. When Ethan falls asleep, he immediately falls into REM (rapid eye movement) sleep which is when we are dreaming. Our body cannot repair properly or get quality restorative sleep during this phase. So as a Narcoleptic, Ethan’s sleep is never restful. No matter how many hours he sleeps, he is still exhausted. To add salt to the proverbial wound, people with narcolepsy often have great difficulty in staying asleep. Ethan has several nights a week where he wakes up over and over again, sleeping in blocks of only around 20 minutes making his exhaustion even more significant.
Ethan has not been able to attend school for over two years which means not only has his education suffered but he hasn’t had the opportunity to form the friendships most of us take for granted. He has missed out on camps, social events and making all the day-to-day memories that spending time with friends at high school gives the average teenager. He has missed out on a trip to the UK to represent his school playing soccer, he has had to give up playing soccer for his club and he can no longer travel on his own.
He has recently started lessons from home to help him continue with his education. He can study for up to about an hour at a time before he needs to sleep, usually three or four hours to recover from the effort.
Ethan needs full time care as it is dangerous for him to be on his own. My mum gave up her work to care for Ethan (bless her!) to be with him while I work full time – it’s expensive being sick!! He is unable to wake up on his own to take his copious amount of medications, he often isn’t able to get out of bed, walk, prepare food, shower or even go to the toilet without having someone to help him, be there to keep him awake or wake him up to get him back to bed if he falls asleep doing these basic daily tasks.
At times he needs a wheelchair when he is simply too exhausted to walk even a short distance.
Ethan is currently on several strong medications to help him feel more awake but they only make a very slight difference. Recently, a new drug called Xyrem has become available in Australia which has been used in the US and the UK for over a decade with excellent results. While this drug is now available in Australia, it is not on the PBS nor is it subsidised in any way. As Ethan’s Narcolepsy is very severe, the dose he will need could cost up to approximately $20 000 a year plus the current medications of around $5 000 a year, meaning that we need to find $25 000 a year simply to give Ethan a chance at a somewhat ‘normal’ life.
This is where we ask for your help. We are fundraising to get Xyrem for Ethan to help him get his life back and any support you can give us will be received with immense gratitude. Thank you.
This photo was taken in the waiting room of a medical centre. Ethan was too exhausted to sit in the chair to wait and had to lay down and sleep on the floor. He gets funny looks and finds it embarassing but has no choice :(
Imagine that you have stayed awake for 48-72 hours. Can you imagine how you would feel? Exhausted, a headache, ‘foggy’ thinking, unable to function, tired beyond belief? Well that is how suffers of Narcolepsy feel ALL the time.
My 16 year old son Ethan, was diagnosed with the rare medical condition of Narcolepsy when he was just 14 years old although he had had symtoms for many years before. It is still not known what causes Narcolepsy however it is believed to be a neurological condition. There can be a genetic component to Narcolepsy (Ethan has the gene) and it is thought that perhaps it can be brought on by trauma. There is no cure which means Ethan will live with this debilitating condition for the rest of his life.
You might have seen characters with Narcolepsy in movies where they suddenly fall asleep and then just wake up and are fine. Narcolepsy in real life is very different. On an average day for Ethan, he will sleep at least 16 hours and often more – sometimes up to 26 hours! We hear a lot of people say things like ‘wow, it must be great to get that much sleep’ but it’s about so much more than simply getting a lot of sleep.
When you and I sleep, we go through sleep cycles during which time our bodies repair, rejuvenate and dream amongst other things. When Ethan falls asleep, he immediately falls into REM (rapid eye movement) sleep which is when we are dreaming. Our body cannot repair properly or get quality restorative sleep during this phase. So as a Narcoleptic, Ethan’s sleep is never restful. No matter how many hours he sleeps, he is still exhausted. To add salt to the proverbial wound, people with narcolepsy often have great difficulty in staying asleep. Ethan has several nights a week where he wakes up over and over again, sleeping in blocks of only around 20 minutes making his exhaustion even more significant.
Ethan has not been able to attend school for over two years which means not only has his education suffered but he hasn’t had the opportunity to form the friendships most of us take for granted. He has missed out on camps, social events and making all the day-to-day memories that spending time with friends at high school gives the average teenager. He has missed out on a trip to the UK to represent his school playing soccer, he has had to give up playing soccer for his club and he can no longer travel on his own.
He has recently started lessons from home to help him continue with his education. He can study for up to about an hour at a time before he needs to sleep, usually three or four hours to recover from the effort.
Ethan needs full time care as it is dangerous for him to be on his own. My mum gave up her work to care for Ethan (bless her!) to be with him while I work full time – it’s expensive being sick!! He is unable to wake up on his own to take his copious amount of medications, he often isn’t able to get out of bed, walk, prepare food, shower or even go to the toilet without having someone to help him, be there to keep him awake or wake him up to get him back to bed if he falls asleep doing these basic daily tasks.
At times he needs a wheelchair when he is simply too exhausted to walk even a short distance.
Ethan is currently on several strong medications to help him feel more awake but they only make a very slight difference. Recently, a new drug called Xyrem has become available in Australia which has been used in the US and the UK for over a decade with excellent results. While this drug is now available in Australia, it is not on the PBS nor is it subsidised in any way. As Ethan’s Narcolepsy is very severe, the dose he will need could cost up to approximately $20 000 a year plus the current medications of around $5 000 a year, meaning that we need to find $25 000 a year simply to give Ethan a chance at a somewhat ‘normal’ life.
This is where we ask for your help. We are fundraising to get Xyrem for Ethan to help him get his life back and any support you can give us will be received with immense gratitude. Thank you.
This photo was taken in the waiting room of a medical centre. Ethan was too exhausted to sit in the chair to wait and had to lay down and sleep on the floor. He gets funny looks and finds it embarassing but has no choice :(
Organizer
Sonia O'Dea
Organizer
Thornlie, WA