Story Time

Meet The Three-Year-Old Girl Who Never Sleeps

Anybody whose ever been kept up all night thanks to someone or something else knows how infuriating it can be. Being robbed of our precious resting time is nothing to sneeze at, as it can severely impact how we function the next day, let alone our mood in general.

For one couple, that feeling is ever-present, but they’re not as mad about it as you might think. Their daughter has a rare condition that affects her sleep patterns—but there’s no need to worry, she’s as happy as ever.

A Good Night’s Sleep

A sleepless night would leave most of us in a pretty sour state. Maybe in younger years we might have been able to pull an all-nighter to finish an assignment or otherwise, but these days, it’d be a struggle to even manage it, let alone deal with the consequences the next day.

Anyone who has ever raised a baby knows how sleep interruptions can affect one’s mood. It’s a rough period when a baby refuses to sleep through the night, but as soon as they start to, it’s a huge relief.

What if your child never grew out of that phase? What if they continued to barely sleep…for years?

Up All Night

A little girl in Renfrew, Ontario, Canada barely sleeps, but thanks to a rare condition, she doesn’t really need to.

Robin Audette and Kirk Hisko’s daughter, Ever, has Angelman Syndrome, a genetic and neurological condition with a number of symptoms.

It can cause developmental delays, issues with speech and balance, intellectual disabilities, and sometimes even seizures. It also affects sleeping patterns, and in Ever’s case, makes it so she can fully function on very little sleep.

Still Well Rested!

“If we can get anywhere between four to six hours out of her, then 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 learned to just roll with it,” said her mom, Robin.

“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.”

Full-Time Care

Among other symptoms of Angelman Syndrome include a short attention span, feeding difficulties, frequently lifted arms, and a generally happy demeanor. Kids with Angelman Syndrome are known to laugh and smile often.

Ever’s dad, Kirk, is a stay-at-home dad so he can help handle all these elements of her illness as well as film and edit videos for their YouTube channel, Hisko Family Fun.

Though their daughter’s sleeping patterns can be disruptive at times, the two parents have learned to roll with the punches, and are largely grateful they have a diagnosis at all.

Time Spent Waiting

Robin and Kirk spent a long time not knowing what was going on with Ever. They first noticed that she wasn’t progressing at the same pace as other children her age, so they sought out help from the Ottawa Children’s Centre in Ontario, Canada.

“I think we’re close to a hundred appointments now since the original assessment. It took almost eight months since the first assessment to actually get in with our developmental pediatrician,” Robin said. “People were just hoping that everything was okay because she was so happy, but it was almost too happy.”

Making Progress

“When we met the doctor, Ever was a little over two-years-old and she had started physio and speech therapy and the Developmental Pediatrician put us on the waiting list to meet with neurology and genetics.”

There was still progress made during their time spent waiting. Ever could take her first steps thanks to a back brace, so there was still support being given in the meantime.

“Our physiotherapist thought that maybe Ever, as well as having low muscle tone, was having some sensory problems. We put a special body pressure vest on her and almost immediately she began walking.”

Those First Words

This immediate success made Ever’s parents more confident that a full diagnosis would help even more, allowing them to learn how Ever’s brain functions and how they can work with it.

Just days after meeting with the Developmental Pediatrician, the two received a call and were asked if they had ever heard of Angelman syndrome.

“I’d never heard of Angelman syndrome, ” said Robin, “It seems strange to have never heard of something that in an instant can become your whole world.”

The Day Finally Came

It took another nine weeks of testing, but Ever finally had her official diagnosis.

Robin described the sense of relief, saying, “When the doctor told us, I had a moment of course where I cried because you can believe something’s true and then you can know something is true 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.”

Trailblazer

Ever has made wonderful progress since then. She’s filled with so much determination and refuses to let anything get in her way; traits that have her parents in awe of her.

“She’s amazing, nothing gets her down and nothing stops her and she never stops trying,” Robin explained. “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.”

She still cannot speak, but she communicates effectively via pointing at pictures, and her parents still plan on sending her to a mainstream public school.

Leaps And Bounds

Angelman syndrome has no cure, but it has been receiving a lot more attention and research in the past few years, which is promising when it comes to potential treatments.

As Robin explained, “They’ve pinpointed the gene, they’ve pinpointed the problem. They are trying to do amazing things. They feel a cure is on the horizon. We’re very excited for that possibility.”

With all that said, they love Ever as she is now, and don’t actively want to change anything about her.

Better For Ever

“We think she’s amazing and we think she’s perfect,” her mother said, “Why we would want a cure is more to make her life easier for her. For her to be able to feed herself, for her to be able to tell you what she wants: anything that could make it easier for her to be in the world would be amazing; however, at the moment she’s happy and that’s all I ever want.

“Everybody who’s met Ever loves 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.”

Though, she did add at the end, “If she would sleep she’d be absolutely perfect!”