Marie did the VHI ladies Mini Marathon 2019 to raise awareness and funds for Narcolepsy Ireland.
Marie’s son Sean, age 15 was recently diagnosed with Narcolepsy.
Here is Marie’s story:
I could see the consultant talking to me but didn’t hear what he was saying. My son had just been told he was diagnosed with narcolepsy with cataplexy. I left Temple Street in a daze and with a sunken heart, I thought we were going to be told that he had chronic fatigue syndrome and that he would grow out of it.
Since he was 12, he has been treated for chronic fatigue. We were informed by the consultant that he would grow out of this by his mid-teens. At our last appointment with the consultant we were informed that his next appointment would be in a year. I left that office upset, confused and very angry (who was going to help us now as his symptoms were getting worse). I made an appointment with our GP who got us an appointment in Temple Street.
On the train journey home whilst my son slept, I read everything about narcolepsy with cataplexy that I could find on the internet. I had to contact Temple Street and speak with a nurse who explained what this illness is.
What is narcolepsy with cataplexy?
Narcolepsy is a sleep disorder characterized by excessive sleepiness, sleep paralysis, hallucinations, and in some cases episodes of cataplexy (partial or total loss of muscle control, often triggered by a strong emotion such as laughter). The way it was described to me was is if I stayed awake for 72hrs straight then that’s how someone with narcolepsy feels.
My son was bubbly and an engaging child but now he is sleeping for hours. My family put it down to the teenage years, he was just lazy and his memory loss was him not paying attention. However, over the last few years I started to think that there was more to this. He is very much into sport and plays both football and golf but after playing or training it was straight to bed. He is always in bed early but always has trouble staying awake during the day (it is like he had jet lag every day). When he comes home from school he goes to bed and falls asleep. He even fell asleep in his exams. He never looks refreshed no matter how long he sleeps for. In the morning as he is wakening, he has hallucinations where he sees dark shadows in his room which is a frightening experience for him. He has a slight face drop for some emotions (shock, laughter).
At least now after the diagnosis we all know that it is not laziness, just being a teenager or waiting for him to grow out of it. Now the battle begins for us and him. My son will have to take medication for the rest of his live so that he can have some sort of a semi normal life. Lucky for him he enjoys playing sport which gives him a social life. All of our family and his school have been made aware of his illness. This had been difficult in some cases for people to comprehend why he needs to nap during the day. As his mum I am extremely proud of him as he always tries his best at everything he does, has always time for his siblings no matter how much he wants to sleep and will always help around the house ( takes for ever for him to do something but he will get it done eventually).
My hope for the future is that my son by taking his medication will lead a semi normal life and that everyone that’s suffers from this and their families get the help they deserve. I hope by telling my story and competing in the mini marathon it will help to highlight narcolepsy and will help to show other suffers and their families that they are not on their own.
Narcolepsy Ireland is committed to providing support and community to people with narcolepsy and their loved ones.From raising awareness to providing up to date information.Marie’s generous contribution will support Narcolepsy Ireland in working towards these goals. On behalf of Narcolepsy Ireland we would like to thank Marie for her kind and generous donation of €305 .