Emily's story: 'Our biggest fear is she could fall asleep while she's eating and choke'

Emily story.jpg

EMILY can fall asleep while eating.

It is what her parents, John and Mary, fear most, given the choking risk posed by her still having food in her mouth.

But the 10-year-old can also fall asleep while in her classroom, while sitting on the sofa at her home, while out shopping with her parents and, incredibly, even while standing up.

A sleep analysis test on her father found that it takes him up to an hour to drift off to sleep under normal circumstances. But Emily can fall fast asleep in less than two minutes.

In 2009 and 2011, Emily received two doses of the controversial Pandemrix vaccine.

The second dose was only discovered by her parents when, worried by their daughter's propensity for sleep, they went for expert help and were advised to request her vaccination record. John and Mary thought Emily had received a simple winter flu jab on January 18, 2011, when they attended their GP clinic.

Later, they learned that Emily had received Pandemrix - and it was her second dose, since she also received the vaccine on November 16, 2009, at the height of the swine flu fears.

Alarmingly, Mary and her older daughter had also received Pandemrix in January 2011.

But they were among the lucky ones who didn't develop any symptoms of sleep disorders from a vaccine now linked to cases of narcolepsy.

Read more: Revealed: Children got double dose of 'narcolepsy' jab

"Emily always loved her afternoon nap as a child. But it was only when she began to get older that we noticed her sleep patterns were totally different to those of her sister," Mary explained.

Worryingly for her parents, her symptoms have been getting worse as she gets older.

"She gets into the car after school and can be fast asleep within a couple of seconds," Mary said.

"If she sits on the sofa beside us during the evening, she will usually fall asleep within a few minutes.

"We have found her lying asleep on the kitchen floor, sitting at the kitchen table and even standing up while leaning against my husband while he was talking to someone."

Emily gets a normal eight to 10 hours of sleep every night but still falls asleep during the day.

"If she is very active or stimulated, she is OK. But if she is relaxed or doing something that maybe she is not 100pc engaged with, she can fall asleep within minutes."


Emily has absolutely no control over falling asleep.

"That is one of our greatest concerns - that she will fall asleep with food still in her mouth and may choke," Mary said. "But when she does fall asleep, she finds it very upsetting when we then try to wake her after about 15 minutes or so.

"It is also very difficult to wake her up - she can be standing up, you can be gently shaking her shoulders to wake her and she can still be fast asleep."

The young couple are also worried as to Emily's education and future, given her condition.

"She has missed about 20 days of school already this year," John explained.

"She is a very bright and intelligent child - she is very interested in a career in medicine. She has told us she would consider working in the area of narcolepsy because she already knows so much about it."

Emily also gets nightmares or 'night terrors' at least every second night - another terrifying symptom of her condition. Her subconscious responds by generating visions or hallucinations that are frighteningly real.

"She has had visions about a wolf's head and monsters being in the room with her. On other occasions she has woken to tell us that other children were in her room," Mary explained.

"I think it is important to say that we are not in any way anti-vaccine. In fact, we believe in the importance of vaccines and our children all received the MMR.

"But it is clear something went wrong with this vaccination and the Government should do what is right and support children who now have narcolepsy."

* Names have been changed

Irish Independent August 2018

Ralph Riegel