So far, 22 children in this country have been diagnosed with narcolepsy after vaccination with pandemrix and a further nine are waiting for tests and test results.
The children and young adults range in age from five to 21 and come from all over Ireland. They developed the condition after vaccination with pandemrix in late 2009/2010.
Narcolepsy is a disabling chronic neurological disorder which is characterised by excessive daytime sleepiness which is often accompanied by cataplexy, causing muscle weakness.
Mairead, whose own six-year old-son Alex Donovan was affected, says that since the launch of SOUND last September they had met with Health Minister James Reilly and raised a number of issues.
These included difficulties in having a diagnosis confirmed, a request that Irish services engage with international experts to give children the best possible interventions and access to a full multi-disciplinary team for the children.
While the Minister, she says, agreed that a multi-disciplinary team input was required there was "no progress" to date.
The parents have asked that a centre of excellence be established and that where family doctors see children with day-time sleepiness who had been vaccinated with pandemrix, they should refer these children to the centre. She said the children affected are "already falling behind in school and becoming disadvantaged with regard to progression and exams". The special needs section of the Department of Education responded with a letter "merely setting out supports already in place which parents/schools can apply for on an individual basis", she said. "Much of this letter referred to 'disability' and 'special needs' -- narcolepsy (and cataplexy) is not legally classed as either."
SOUND has now written back advising that this response is inadequate and does not address the very specific requirements of the children. A further meeting has been sought, but SOUND has not had a response to date.
"It is vital for our children's futures that their new needs are accommodated within the school environment, otherwise they cannot hope to have the same future we looked forward to prior to their diagnosis."