THE Northside mother of a teen who developed the sleep disorder narcolepsy has criticised Minister for Health James Reilly for refusing to meet her campaign group.
Mary Fitzpatrick (pictured), who heads the SOUND lobby group (Sufferers of Unique Narcolepsy Disorder), made up of 51 children and their families, has been requesting a meeting with Minister Reilly for several months.
Her requests were officially rebuffed three weeks ago when she received a letter on his behalf, citing Minister Reilly’s
“very busy schedule
?.
“It came like a slap in the face to us and I was sick in my stomach having to tell the other members of the group that he couldn’t make himself available to us,
? Ms Fitzpatrick told Northside People.
“The fact that there was no effort to facilitate a meeting at any time that his schedule might allow has added insult to injury.
“We haven’t heard anything from the Minister in months.
?
April 19 will mark the one-year anniversary of the publication of a report that found there was a
“true increased risk
? of narcolepsy in young people vaccinated with the Pandemrix vaccination, aged five to 19 years.
Mary Fitzpatrick’s son, Conor (16), is among those who developed the debilitating sleep disorder after getting the vaccination.
“These children are stuck in limbo,
? Ms Fitzpatrick stated.
“They are getting older and they need permanent supports in place to help them.
“What people don’t realise is that they will have this condition for the rest of their lives.
“They struggle every day and this has a wider knock-on effect on their families.
“It’s not like you can put these children on a bus to go to school or college. Some of them may not ever be able to drive or continue into third level education.
“Some parents have even had to give up work to look after their child who developed narcolepsy.
“This situation is through no fault of our own. We were just trying to protect our children and taking the Government’s vaccine recommendation and now our children’s lives are forever changed.
?
She added:
“After the report was published the Minister said he would have supports in place by the summer but we’ve heard nothing since. His silence speaks volumes.
?
Ms Fitzpatrick said that the least she and the other members of SOUND deserved was
“common courtesy and respect
? from Minister James Reilly.
A spokesperson for the Department of Health said the Minister and officials from the Department, HSE and Department of Education had met with SOUND on
“a number of occasions, to address their concerns and to outline the wide range of services available for those affected by narcolepsy following pandemic vaccination
?.
“In addition, the department is considering other possible supports which may need to be put in place for those affected by narcolepsy following pandemic vaccination,
? he told Northside People.
“A further meeting with representatives from SOUND will be arranged when the matter has been concluded.
?
The spokesperson explained how supports and services such as access to rapid diagnosis, treatment, temporary medical cards and reimbursement of expenses incurred have been already been provided as supports to those affected.
?¢ Anyone who wishes to contact SOUND can do so by sending an email to soundcommittee2011@gmail.com