Most three-year-olds spend their days running around until they’re exhausted and then fall asleep for hours. Little Ever Hisko is slightly different, in fact, she can have only one hour’s sleep per night and still feel rested.
The longest the little girl ever sleeps for in one night is four to six hours according to her parents, unlike toddlers of a similar age who need ten to 12 hours night sleep, as well as day time naps.
Ever has Angelman Syndrome, a genetic and neurological condition which severely affects a person's sleeping habits.
While her parents Robin and Kirk cherish their little girl, they find coping with her sleeping patterns quite difficult, in fact they often have to sleep in shifts like parents of newborns.
Robin, 35, said: “If we can get anywhere between four to six hours out of her than we’ve done good but there are nights she wakes up after an hour and a half she’s good to go for another six hours. We’ve kind of learnt to just roll with it.
“We’re only human and we need to sleep – but she doesn’t. It’s amazing, she can function with no sleep and still be happy.”
Angelman syndrome is a genetic disorder, characterised by severe intellectual disability, lack of speech, sleep disturbance, and usually a happy demeanour. It affects one in every 20,000-25,000 people.
The little girl was diagnosed with the condition after her parents noticed she wasn’t progressing as fast as she ought to be, according to The Mirror.
It took some time for her parents to receive a definite diagnosis. They had never heard of Angelman syndrome before and were shocked.
Robin said: “When the doctor told us, I had a moment of course where I cried but we kept moving forward.
“Our lives have changed enormously in lots of different ways - mostly good. We finally feel like we have our answer, we understand what’s going on. There were so many things that didn’t make sense before.”
Ever has made great progress and began walking after being fitted with a special body pressure vest. She cannot speak but is able to communicate by pointing at pictures.
Robin said: “She’s amazing, nothing gets her down and nothing stops her and she never stops trying.
She doesn’t even seem to understand that she’s not doing everything that everyone else is doing because she’s having such a great time and she sends out so much love.”
Robin explained that Ever’s sunny demeanour draws people to her: “She’s a beautiful, brilliant ray of sunshine. She bounces around and you can’t help but smile. Everyone who meets her falls in love.
"If she would sleep she’d be absolutely perfect!”
Angelman Syndrome Facts
Angelman Syndrome is a rare genetic disorder affecting the central nervous system and can cause physical and intellectual disability.
It occurs when a gene known as the Angelman gene or UB3A is either absent or malfunctions.
Behaviours associated with the condition include frequent laughter and smiling, being easily excitable, flapping hands, being restless, having a short attention span, problems sleeping, needing less rest than other children and a particular fascination with water.
Babies who have Angelman syndrome may have problems sucking and swallowing.
There is currently no cure for the condition at present but there are a wide variety of treatments to help counteract the effects.
Children are usually diagnosed between the ages of three and seven years old. For more information visit Angelman Syndrome Ireland or ASSERT UK.
