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Thursday 2 October 2014

Two years of waiting for Ministerial action

SWINE FLU JAB CAUSED NARCOLEPSY IN DAUGHTER

PADRAIG BYRNE

Published 13/11/2012 | 12:38

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Larry and Siobhan Kavanagh, whose daughter Lauren contracted narcolepsy after being given the swine flu jab in 2010.

PARENTS of a young girl who contracted the sleep disorder narcolepsy after she was given the swine flu jab in 2010 are hoping to put pressure on the Minister for Health to implement a ' package of supports', which he promised he would put to the government earlier this year.

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Larry and Siobhan Kavanagh, who are currently living near Piercestown, are pushing for Minister James Reilly to honour his commitment to implement various supports for people like their daughter Lauren. Lauren was twelve years old when she was one of 900,000 people to receive the Pandremix vaccine as part of the 'swine flu protection programme'. A while afterwards Lauren and her parents were given the devastating news that she was among a group of about 40 children who had contracted narcolepsy as a result of the jab.

Her father Larry, who is originally from Craanford, said: ' The consequences of that jab have changed her life forever. She is now one of 40 or so children that have a chronic sleeping disorder, having led a perfectly normal healthy life prior to this. There is no known cure. She can sfall leep anywhere anytime during the day. She will be relying on medication for the rest of her life and, even with it, she needs naps like Formula One race cars need pit stops.'

Lauren, now 14, is attempting to go about her life like any normal teenager.

' She's doing quite well, relatively speaking,' her mother Siobhan, originally from Oulart, said. ' She's currently in second year in the Loreto in Wexford and she's doing fairly well, considering. It can be tough for her because she can fall asleep in class or lose concentration very easily, but the medication helps.'

Lauren herself is keen to stress that her condition doesn't make her much different to others of her age. 'I suppose at first I was afraid it would be taken the wrong way,' Lauren said. ' A lot of people don't even know about my condition and I think it's really important to get across that it doesn't make me that different. I still go to school and play lots of sports. Only people who are around me a lot of the time are aware that there's anything different about me.'

Starting secondary school is a difficult time in any young person's life, but for Lauren it was extra difficult as her condition had not yet been diagnosed. ' She had a horrendous start to secondary school,' Siobhan said. ' She hadn't been diagnosed and was struggling to stay awake in class. On top of all that, she broke her arm to make things worse! It was a tough first year for her but she's come through it very well. She's a very strong character and I think she's able for it.'

Larry continued: 'For the first six months or so when Lauren was falling asleep any time or anywhere, we didn't know what was wrong. We thought it was some kind of developmental thing or that she was run down because she's so active and plays a lot of sports.'

Although Lauren is managing to cope quite well with her condition, her parents Larry and Siobhan have been left frustrated by the government not delivering on promises of support.

'They've really been fobbing us off,' Larry said. ' Dr James Reilly promised members of SOUND (Sufferers of Unique Narcolepsy Disorder) that a paper would be put to the government before the Dáil summer recess, proposing a package of supports for those affected. This didn't happen and then we were told it was delayed until September 2012, and then October and still nothing has happened. The latest we've heard is that a statement will be made by the Minister in four to six weeks. Not only do we not know what the package of supports involved will consist of, but we have no idea when it will come into play.'

Larry was also keen to stress that they have received some help from State agencies. 'We have had some support,' he said. ' State agencies have provided temporary medical cards for those affected and have reimbursed certain medical fees, but these things could be withdrawn any day. In Finland and Sweden, the government stepped in more or less straight away and the people who were affected by the vaccine were given medical, educational and compensatory supports.'

Siobhan added: ' What happens when this generation goes on to college or into the workforce? Because of their condition they may only be able to work part time, and they medication can be very expensive.'

Larry and Siobhan have written to two senators, five TDs and 17 local councillors in an attempt to bring the issue back to the spotlight, and while they have received letters of acknowledgement, nobody has yet brought the issue up once more. They will continue to apply pressure until Minister Reilly follows through on his promise.

'Our child is suffering as a result of a government-led programme in the vaccination against swine flu. We should be looked after. We shouldn't be having to chase these people down for answers,' they say.

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