Vaccine Gives Teen Narcolepsy
A Southside Dublin 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.
According to Orla’s mother, 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 said. 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 characterized by periods of extreme drowsiness, sudden naps, hallucinations and paralysis attacks.
“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.”
She is also struggling in school, where she has the assistance of a special needs assistant.
“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 honor a commitment that a package of supports for those affected would be put to the government.
Teddies Stolen From Grave
The grieving mother of a little girl who lived for one day is heartbroken after teddies were stolen from her daughter’s grave.
Mary McCarthy’s first child, Skylar, died just over 10 weeks ago from congenital diaphragmatic hernia. The Hospital woman and her partner, Anthony, visit Skylar’s grave every Saturday in Kilteely cemetery.
“Last Saturday we went down at 1 p.m. to discover that all her teddies were stolen off the grave,” McCarthy told a radio show.
“We had taken another teddy down with ‘I love you’ written on it,” she added.
They placed that teddy in the graveyard but when they returned at 6 p.m. it was gone as well.
“I was heartbroken. It is just cruel to do something like that. We are very upset over the whole thing,” said McCarthy.
The pain of losing their daughter has been compounded by these thefts, she said.
“She was only a day old. It was very traumatic. We are only coming to the state now that we realize that we don’t have her,” McCarthy said.
“I was told I was having a healthy little baby. I didn’t know anything until after I was sectioned and I was told the baby was critical. It has been awful, we have been through enough.”
There were numerous teddies placed at the grave by the two families, Skylar’s godmother and little cousins.
“Words cannot describe what we are going through and still going through, and will be for the rest of our lives. “It was helping us every Saturday when we used to go down there, and then to realize that all her little teddies were gone. There wasn’t anything touched bar the teddies,” said McCarthy, who thinks it was teenagers that stole them.
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