By David Raleigh
A Limerick teenager who says her incurable sleep disorder is linked to the swine flu vaccine, and that the State is liable, will soon have her case heard in court
Kellie O'Gorman said she is going public with her story to highlight her condition in the hope she and others like her will get more help.
Kellie is one of 80 Irish children diagnosed with the incurable sleep disorder narcolepsy, after receiving the H1N1 swineflu vaccine in 2009.
She also developed cataplexy, a condition that causes her muscles to collapse without warning, leaving her temporarily paralysed.
She suffers from severe depression and chronic anxiety, and has come to rely on prescribed medication.
Kellie received the H1N1 vaccine when she was aged 10.
The vaccine was made available during global panic over the swine flu pandemic in the winter of 2009 and 2010. The flu turned out to be much milder than feared.
Soon after she received the vaccine, Kellie's mum, Jackie, noticed something "weird" whenever Kellie laughed or smiled.
Kellie, now aged 17, said: "I'd lose control. It was like my muscles were giving up".
Around the same time, Kellie was turning heads on the GAA pitch as a member of her local camogie team, but her dreams of playing for her county soon faded.
"My knees started to buckle. Then I started falling asleep all the time. I didn't understand why," she said.
"I thought she was lazy," Jackie said, fighting back tears.
Kellie soon developed insomnia and started to hallucinate.
"I would be screaming at night because I would think there was someone in the room with a knife," she said.
With no understanding of her illness, Kellie began self-harming aged 14 and says she came to a crisis point a few weeks ago.
Since her diagnosis three years ago, she is allowed take naps during the school day, and she has a Special Needs Assistant (SNA) to help her keep up with her peers.
"It has stolen everything from me - all my teenage years; my childhood; my family, my confidence; my friends," Kellie said.
She said: "It's difficult to process and accept that this is my life now. I'm expected to just get on with things. Nothing has been addressed and the State haven't taken responsibility for the pain that this has inflicted on myself and others, whose lives have been turned upside down.
"My teenage years and education have been stolen. I've reached out for support, wanting to come to terms and accept that this is my life now and there's no going back. I've written letters and emails to people and I'm not being heard.
"I wake up some days and it feels like this is all just a nightmare and that I'll soon wake up. I feel as though I have lost a part of me and I'm still grieving the loss of my independence and freedom."
The Department of Health confirmed in a statement that, "the Health Products Regulatory Authority (HPRA) has received a number of reports with clinical information confirming a diagnosis of narcolepsy in individuals who were vaccinated with pandemic influenza vaccine".
It said: "The majority of these reports relate to children/adolescents.
"The Department of Health, the HSE and the Department of Education and Skills continue to work together to provide a wide range of services and supports for those affected."
The State has indicated it will fight 60 children, including Kellie, in the courts for compensation claims.
The first legal stage of the cases is due to come before the High Court this week, when an order will be sought for discovery of documents from the Department of Health and the vaccine manufacturer GlaxoSmithcline (GSK).
At the time the vaccine was issued, GSK secured an indemnity agreement from the Irish government from any potential compensation claims.
The government is denying it owes a duty of care to those who received the jab.
The 60 plaintiffs allege negligence by the State and GSK in the circumstances where they were administered the vaccine and/or that the vaccine was a defective product.
Former Progressive Democrat leader Mary Harney was Minister for Health at the time the Government sanctioned the delivery of the vaccination.
At the time Switzerland, America, Poland and Australia refused to grant a licence for the vaccine.
Children in several other countries have been compensated; some through what is termed a "no-fault vaccine redress scheme".
In the Netherlands, some children have received payouts of nearly €1m.