Doctors believed Emma was far too young to have narcolepsy, they said. However, she was finally diagnosed with the condition when a specialist doctor returned from leave.
“It was such a relief for someone to listen and believe to what I was saying,” added Ms Grant.
A sleep disorder characterised by excessive sleepiness, narcoleptics often suffer sleep paralysis and dream-like hallucinations. In some cases, as in Emma’s, episodes of partial or total loss of muscle control can take hold of the body.
Emma also experienced night terrors and periods of insomnia at night. Narcolepsy is a lifelong condition that improves only marginally through a cocktail of medicines.
Aged seven, Emma is now heavily medicated. She takes an amphetamine before school and Rohypnol- a potent sedative often referred to as the date rape drug- at night.
She sleeps for around 40 per cent of any given waking day, often arriving at school late and leaving early as she cannot stay conscious for more than an hour or two at a time.
“Some days she is awake for a good bit and she might have enough energy to play for an hour, but the aftermath of that is tough. It takes so much out of her,” said Ms Grant, adding that Emma has no friends because she is scared of falling in the schoolyard when her muscles give way.
Either side of her naps Emma is “cranky, demon-like”.
“Last year she was like a totally different child. I was quite scared,” she said.
“The best way I can explain it is it feels to her like she has been awake for 72 hours.”
The first Narcolepsy Awareness Day took place on September 22
With Emma’s journey defined by a lack of understanding about her condition, Naomi Grant, her husband Derek, and other family members now help to run the voluntary organisation Narcolepsy Ireland.
Set up by Ballina-based Elaine Armstrong, who also lives with the condition, Narcolepsy Ireland aims to improve knowledge and awareness about the lifelong condition.