It's exhausting being a parent. Late nights and early mornings, and that's not counting the countless interruptions in between. There's always something else to do, even if your new "bundle of joy" is cooperating. When you're a new parent having a child sleep through the night can seem like a vacation, but that's a feeling that parents Robin Audette and Kirk Hisko are never going to know.
Their daughter was diagnosed with Angelman syndrome, a neurological condition with a number of symptoms, but one in particular that wreaks havoc with the lives of parents: a lack of requirement for sleep.
Their daughter Ever Hisko only needs to sleep for 90 minutes per night. After that she's wide awake, and won't be able to be put down for sleep until the next night. Just think about that.
The syndrome isn't threatening to Ever's life, and while it does make it more difficult for her to move, there's no pain or other symptoms that might really make a parent worry. The parents say their daughter is perfect..."if only she would sleep."
"She's amazing," said Ever's mom, Robin. "Nothing gets her down and nothing stops her and she never stops trying."
It's everything a parent could ever want, but Robin and Kirk have had to learn how to manage themselves and Ever's condition.
"We're lucky if we get 6 hours a night," she said. And that sleep must come in shifts, with one parent awake while the other gets some well-deserved shuteye.
"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. She sends out so much love," Robin said. Nothing that the couple just rolls with it now.
Lack of sleep might seem like a blessing after their initial fears. After about a year they noticed that Ever wasn't progressing at the rate she should be. They took her to a pediatrician who started to examine Ever for signs of anything from Cerebral Palsy to autism.
Angelman Syndrome and autism share several common symptoms, including difficulty communicating. Those with Angelman syndrome however normally have a constantly happy demeanour, shorter attention spans and muscle abnormalities like outstretched arms.
When they tried a special pressure vest to deal with Ever's unusually low muscle tone, the toddler almost instantly began walking. That helped lead to a fuller diagnosis.
A few days after Ever began to walk Robin got a called from the doctor, asking if she had ever heard of Angelman syndrome.
The disease occurs in about 1 out of every 20,000 children, and is commonly misdiagnosed due to the shared symptoms with autism. It wasn't even discovered until 1965, when a British doctor began seeing similarities between some of his patients.
"It seems strange to have never heard of something that in an instant can become your whole world," said Robin.
The syndrome was initially called "Happy Puppet Syndrome" because of the happy attitude of sufferers and their jerky body movements. It's been known as Angelman syndrome, named for the doctor who discovered it, since 1982.
After long hours at the computer researching the rare condition the family is going forward with an optimistic outlook. New breakthroughs mean that the incurable disease might soon have a treatment, and it might come just in time for these tired parents to get some sleep.