LIVING WITH NARCOLEPSY PART THREE

Clonmel father speaks out about daughter's battle with narcolepsy

County Tipperary Junior Certificate student's battle with narcolepsy with cataplexy.

Dylan White

Reporter:

Dylan White

Email:

dylan.white@iconicnews.ie

A Clonmel father has described the challenges his daughter faces every day after being diagnosed with narcolepsy with cataplexy in the aftermath of receiving the 2009/2010 H1N1 swine flu vaccine Pandemrix.

Vincent Laste says his daughter Niamh went from being a vibrant and outgoing child that was always on the go to someone who at times looks like she’s going through "deep depression”.

Vincent says it’s “horrible” watching 15-year-old Niamh struggle to get through the day, and fears that the autoimmune disease -  which is characterised by excessive daytime sleepiness, disturbed night-time sleep, vivid nightmares and hallucinations, sleep paralysis (a feeling of being conscious but unable to move) and a sudden loss of muscle tone known as cataplexy - will impact Niamh’s future unless proper supports are put in place by the Government.

Vincent, his wife Mary Williams and Niamh are part of SOUND (Sufferers of Unique Narcolepsy Disorder), a campaign group set up by parents of children who have developed narcolepsy. The registered charity provides support for 87 Irish families who were diagnosed with the chronic condition after receiving the vaccine. SOUND wants the State to provide a pathway for the children and young adults with narcolepsy to move through life without each having to be assessed on an individual basis for supports they require. The group also want a national narcolepsy service to be put in place at St. James Hospital in Dublin.

Clerihan’s Niamh was diagnosed with narcolepsy with cataplexy in 2014 after having a multiple sleep latency test and a lumbar puncture at the Mater Private Hospital in Dublin. “The last couple of years have been extremely difficult for Niamh and the family. My wife has given up work because there’s so much we have to do to just get her through the day - from getting her up out of bed, getting her to school and dealing with mood swings - and it took us a good year to understand what she’s going through,” Vincent tells The Nationalist.

Vincent says narcolepsy with cataplexy has turned Niamh’s life upside down. “When she’s in a mood you can't talk to her. She gets frustrated and distressed about really simple things. It has taken time to understand that this is the impact narcolepsy is having on Niamh's life. It can be a struggle sometimes and it's difficult for the whole family," Vincent explains.

Niamh is studying for her Junior Certificate at Loreto Secondary School in Clonmel, but is subjected to a host of nightmare challenges unlike the rest of her classmates.“There are good days, ok days and really bad days. She gets medication twice nightly - at 10:30pm and again at 2am. 6:30am is the start of the morning routine with Niamh taking her next dose of medication. We try to coax her out of the bed after half seven for school and that’s so difficult when you see how bad she can be. Sometimes she can’t get up - it just doesn't happen and we have had to come to terms with that.

“When she does manage to get up we can see that she’s tired and not fully awake on the way to school. She goes in and manages for the first couple of hours and then she will have a nap in a bed provided by the school in a quiet room. If she doesn't have that nap she will start to lose brain function and things will start turning to gibberish. She could be writing things in school and when she looks at them later at home she can't understand them - that’s how bad things can be. Her mental capacity completely disappears. People associate narcolepsy with just falling asleep around the place but that isn't necessarily the case. Yes, she gets tired and falls asleep easily but she also gets foggy brain and you can imagine how difficult that is for a teenager in school.

“The school have been very good to Niamh. They basically have to tease out what classes she’s going to miss throughout the year. Obviously she can’t dictate class times. She needs a nap between 11:30 and 1pm and that basically means taking a class out, and she doesn’t have to do subjects like religion and PE. She takes two half days a week - on Thursdays and Fridays - because five full days are too much for her. She gets some grinds and home tuition to make up for what she misses out on, but it’s difficult for her to keep up,” Vincent underlines.

Narcolepsy with cataplexy has devastatingly impacted Niamh’s social life. “She was mad into football, soccer, ballet, gymnastics and dancing at On Your Toes Dance Academy but she’s too busy with school and too tired to continue them. She has no social life at all during the week, and not meeting up with her friends has been the most difficult aspect of it for her. She has a nap when she comes home and more medication to keep her awake until around 10pm.The nap gets her going again.

“Her school day is really 9am to sometimes 8pm, and when she’s at her worst you will often hear her say ‘I have no life’ and ‘my life is crap’. These are the things that really get your heart strings going. We have got her counselling which helped to a certain degree, and my wife and I went for counselling to get some direction and it helped us a small bit.

“It’s unbelievably hard for Niamh and the family and I can’t emphasize that enough. It’s hard to describe - one minute we’re looking at a vibrant, happy child and within minutes she’s like someone going through deep depression. It’s a terrible thing to witness. It happened to us on holidays - we were having a good time laughing and joking and getting ourselves ready to go out for a meal and within five minutes cataplexy had hit and Niamh was tired and just got so frustrated she wasn't able to go out. Being in tune with what's going on for Niamh is now a major daily requirement and part of our lives and daily routines," Vincent admits.

Vincent says medication and routine are essential to Niamh getting through the day. “Kids her age have a natural reaction to fight that. She always falls down when she tries to outdo the whole routine thing and it just doesn't work.

“It has been heartbreaking to watch her struggle the last few years, but we have got to as good a place as possible given the circumstances. She has really worked hard to keep her grades up and we are really proud of her. She has a great understanding of her condition and she looks it up online. She thinks a lot about the future and we get great heart out of that,” Vincent adds.

But the Laste family are constantly jumping through hoops to get Niamh the supports she needs. “What happened to Niamh is wrong and in a couple of years it will all come out. We get angry when we think about it, and we deserve to know what happened with the swine flu vaccine.

“The most important thing now is getting Niamh to a positive place in the future where she gets the right opportunities in life, going through college and moving into the workforce.

“The best we can hope for is that she finds her way in dealing with it because at the moment we do pretty much everything for her. I have no doubt that she will come to a point in her life when she can take over and make a success of things, but it’s not going to be easy. As parents we must now ensure at whatever cost that Niamh is given every opportunity to reach her full potential," Vincent concludes.