Parenting

My daughter’s rare condition means she only sleeps for an hour, I’m exhausted but I’d never change her


A MUM has revealed how her daughter’s rare condition means that she only sleeps for one hour a night.

Exhausted parents Robin Audette and Kirk Hisko are lucky to get between four to six hours sleep a night, but their energetic daughter Ever can survive on as little as an hour and a half.

Robin Audette's daughter Ever can survive on almost no sleep

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Robin Audette’s daughter Ever can survive on almost no sleepCredit: Truly

In fact their little girl has even been known to sleep at 20 minute intervals throughout a whole night. 

The reason for Ever’s sporadic sleeping patterns? Angelman syndrome: a genetic and neurological disorder, which occurs in approximately 12-20,000 people.

Ever first began experiencing problems the moment her parents brought her home from the hospital.

Speaking to Truly, Robin, from Ontario Canada said: “After we brought her home from the hospital almost immediately she started having trouble.

The tot can survive on as little as an hour's sleep a night

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The tot can survive on as little as an hour’s sleep a nightCredit: Truly
Ever has Angelman syndrome, with one of the main symptoms being an ability to survive on very little sleep

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Ever has Angelman syndrome, with one of the main symptoms being an ability to survive on very little sleepCredit: Truly

“She was having trouble feeding, she was having trouble keeping food down and she was very unhappy.

“We immediately felt like we were doing something wrong, it just seemed like nothing we did could make her happy.

“We felt like we must be doing it wrong.”

At three weeks old Ever was diagnosed with GERD, an extreme form of acid reflux.

“Once we got on the proper medication her feeding just calmed down and she became a lot happier,” Robin explains.

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Her parents had never heard of the disorder before Ever was born

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Her parents had never heard of the disorder before Ever was bornCredit: Truly
The rare disorder occurs in approximately 12-20,000 people

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The rare disorder occurs in approximately 12-20,000 peopleCredit: Truly
Symptoms can include a frequent happy demeanour

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Symptoms can include a frequent happy demeanourCredit: Truly

“While Ever was happy, she started missing milestones, we started to research, is she behind because she had such a rough first year of life or is she behind because she has something else going on.”

But the parents didn’t get the answers they were after until just after Ever’s second birthday in 2016.

“I’d never heard of Angelmen syndrome,” Robin says.

“It’s so strange to have never heard of something that in an instant cane become your whole world.”

One of the main symptoms of Angelman syndrome is the ability to function on minimal sleep

Ever wasn't diagnosed until just after her second birthday

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Ever wasn’t diagnosed until just after her second birthdayCredit: Truly

Robin says: “Sleep is our biggest struggle mainly because Kirk and I are the primary caregivers. 

“We don’t get a lot of sleep and we try to be there all the time so we find that can be rough on us.

“We’re only human and we need to sleep and she doesn’t.

“If we can get anywhere from four to six hours out of her in a night we have done good.

“It’s amazing, she can function on no sleep at all and is amazingly happy.”

Despite her minimal sleep Ever, who was still unable to speak at the age of three, is nothing but a source of joy to her parents.

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Robin adds: “I worry that the world won’t always treat her nice and I worry that i won’t be here forever. 

“Anything that could make it easier for her to be in the world would be amazing but she’s happy and that’s all I ever want to see at the end of the day.”

In other parenting news, this mum revealed that her eight-month-old baby sleeps on a mattress on the floor because it teaches independence.

And a mum let her son, TWO, make his own dinner from scratch – chopping veg & boiling pasta – but insists it’s not dangerous.

Plus this mum made a chore list to trick her kids into doing jobs and say her house is the cleanest it’s ever been.

Young carers reveal heartbreaking reality of looking after sick siblings and being cut off from kids their age





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