Teen battles sleep disorder nightmare

A SOUTHSIDE teenager who developed narcolepsy is enduring a living nightmare as a result of the sleep disorder.

The life of Knocklyon schoolgirl Orla Kelly Murtagh has been turned upside down by the condition which is believed to have been caused by the Swine Flu vaccine, Pandemrix, which she received in 2009.

Orla, who was a bright and sporty teenage girl, now needs to retire to a special room in school to sleep twice a day, despite being on a high dosage of medication to keep her condition at bay.

The Junior Cert student at St Colmcille’s Community School was also a promising hockey player, but this has also suffered as a result of the debilitating sleep disorder.

According to Orla’s mum, Aoife Kelly, the condition has taken over almost all aspects of her daughter’s life.

“A few weeks after she got the vaccine she started to sleep a lot more,

? she told Southside People.

“Then she developed the muscle reflex called Cataplexy where she would suffer a sudden loss of muscle tone that would cause her to collapse.

“We worried that it was Motor Neuron Disease. That was a real low point for us. As a parent you feel so helpless.

?

There followed months of tests and a process of elimination to identify the root of Orla’s medical condition, which was eventually diagnosed as narcolepsy.

The condition, which is very rare among children, is characterised by periods of extreme drowsiness, sudden naps, hallucinations and paralysis attacks.

She is on a high dosage of medication to stabilise her condition.

“Prior to getting the vaccine, Orla was a very active and promising young hockey player but now she’s dropped down the teams,

? Aoife explained.

“Sometimes when she thinks she’s up for training we’ll drive there and she’ll fall asleep in the car and miss the whole practice session.

?

The Junior Cert student is also struggling in school, where she has the assistance of a Special Needs Assistant (SNA).

“She misses the last class before lunch so she can sleep and then another class after lunch,

? Aoife said.

“The school has been incredibly supportive and accommodating so she goes to the nurse’s station where there’s a bed and a blanket with her name on it.

“We were adamant that we didn’t want her to sleep through lunch because she would miss out on the social aspect of school.

?

A report commissioned by the Department of Health earlier this year found the increased incidence of narcolepsy in children and adolescents in Ireland from 2009 was associated with vaccination with Pandemrix.

Aoife Kelly is angry that her daughter will now have to live with this condition for the rest of her life through no fault of her own.

“I try not to think too far ahead because I’ll go out of my mind,

? she admitted.

“I never, ever thought we’d be in this situation where we would have to worry about our daughter’s long-term care and how she’ll be supported.

?

Aoife and her daughter are members of lobby group SOUND (Sufferers of Unique Narcolepsy Disorder), which is calling for the Minister for Health to honour a commitment that a package of supports for those affected would be put to the Government.

That paper was due before the summer recess but has yet to be published.

A spokesperson for the Department of Health said the minister’s priority was to ensure that children and adolescents affected by narcolepsy are provided with services and supports to meet their health needs.

The spokesperson said the minister was working with the HSE and the Department of Education and Skills in this respect.

“The HSE provides a range of services and supports to those affected including access to rapid diagnosis, clear treatment pathways, temporary medical cards and reimbursement of expenses incurred,

? he stated.

“Multi-disciplinary assessments that allow for the appropriate individualised health and educational supports to be put in place have commenced.

“These supports can include special arrangements at State exams, access to Special Needs Assistant support, additional learning assistance in schools and information for schools regarding this condition, and home tuition support for children who have missed a significant time in school due to illness.

?

The spokesperson added that the department was considering all other possible supports which may need to be put in place for those affected.

“Any such supports require ministerial approval and the consent of the Minister for Public Expenditure and Reform,

? he said

Anyone who wishes to contact Sound can do so by sending an email to [email protected]