Lauren needs 45-minute exam break to properly reflect her abilities

That gnawing apprehension that plagues the parents of children facing a major exam series is significantly amplified for Siobhán Kavanagh because of her daughter Lauren’s narcolepsy.

One of the unfortunate few to develop the chronic sleep disorder after receiving the Pandemrix vaccine against swine flu, the 15-year-old from Piercestown, Co Wexford, will sit her Junior Certificate in June.

While her school has worked hard to accommodate Lauren’s disorder, Siobhán worries her needs may not be adequately catered for in an exam situation.

“Her exams are two and a half hours long but in order to be able to produce a paper that actually reflects her ability, I am looking for her to be allowed a 45-minute nap halfway through,” says Siobhán.

Lauren, who at times suffers intense night-time hallucinations that leave her physically and mentally drained, must work twice as hard as everyone else to stay on top of things, says Siobhán. Recently, she had to up her dose of Ritalin to try and combat daytime sleepiness. Lauren also had to drop two exam subjects and uses those free classes to catch up on the hours of study she loses to sleep.

Despite her struggles, Siobhán has still not been told how Lauren’s illness will be accommodated come exam time, or whether the 45-minute nap will be sanctioned.

It is this lack of certainty around the supports that will, in the future, be available to those who developed narcolepsy after taking part in a State vaccination programme that most troubles Siobhán.

Like the 60 or so other Irish families with members affected by the disorder, Siobhán fears they are at the whim of health budgets and the government of the day.

“I do feel we don’t know what the future holds for Lauren,” she says.

“While she has a medical card up to 2015 and we are reimbursed for out-of-pocket expenses such as physiotherapy, there are no guarantees, despite the fact that narcolepsy is for life.”

Out-of-pocket expenses for the Kavanaghs and many other families affected by narcolepsy can include occupational therapy, counselling, psychological assistance, and visits to dieticians. They also include any visits to private consultants and any tests or scans. For those who must travel for medical appointments, it’s an additional out-of-pocket expense, as is the overnight accommodation that some must fork out for.

Families must also deal with the fact that children may not be able to hold down a job and may struggle to participate in third-level education.

Larry, Lauren’s father, says he wants “some sort of safety net in place within the welfare system” if his daughter cannot keep a job.

“These kids were collateral damage in pandemic warfare and they need to be lifelong recipients of gold-plated state benefits,” he says.

Siobhán agrees. “This is a medical tragedy,” she says. “Of course, no-one meant it to happen, but the question is, is it going to turn into a medical scandal?”