Every parent’s wish is to have their baby be born healthy, happy, and without complications. But for some parents — health problems might be invisible or show unassuming symptoms for days, weeks, or months to come after they are born. It can be a parent’s life’s dedication to figure out a diagnosis for their child.
For parents Robin Audette and Kirk Hisko — this was their reality when it came to their 3-year-old daughter Ever. Even though Robin says that Ever’s birth was extremely easy, Ever’s life would be far from simple.
Ever’s parents noticed that once they brought her home, she was having issues eating and keeping food down. She was very fussy which, in turn, made Robin and Kirk feel like they were doing something wrong as first-time parents.
At just 3-weeks-old, Ever had her first hospital visit.
The sweet baby was diagnosed with GERD ( Gastroesophageal reflux disease) which is an extreme form of acid reflux. After this diagnosis and proper treatment Ever was doing much better. Robin says that she became a much happier baby.
As time went on — that happiness seems almost a little odd to Robin and Kirk.
“She was so happy at this point, it was almost too happy and she was definitely missing milestones,” says Robin.
Ever’s parents weren’t sure if she was behind in development due to her rough start or if something else was going on.
It wasn’t until after Ever’s 2nd birthday that they finally got the diagnosis they had been waiting for. Ever had Angelman’s Syndrome.
“I’d never heard of Angelman syndrome, it seems strange to have never heard of something that in an instant can become your whole world,” said Robin.
Angelman Syndrome is a rare genetic neurological disorder that affects 1 in 15,000 live births. It can cause severe physical and intellectual disability.
Other symptoms of Angelman Syndrome can include:
- Developmental delays
- Speech impairment
- Movement and balance problems
- Frequent happy demeanor
- Hand flapping
- Short attention span
Another main symptom of Angelman Syndrome is the ability to function off of zero to little amounts of sleep.
Robin and Kirk find that Ever’s lack of sleep is one of their biggest problems because it’s only the two of them that take care of her. They feel lucky if they are able to get her to sleep for 4 hours.
“We’re only human and we need to sleep…and she doesn’t,” explains Robin. “It’s amazing though because she can really function with like no sleep at all.
Ever is over 2-years old and has still not spoken a word.
Robin and Kirk were told that their baby may never speak but they hold onto hope that she will someday. Their biggest concern is that Ever will have problems throughout her life with people not being very nice to her.
Ever’s parents want to make sure that they create a giant support system for their daughter because they know they won’t be around forever. They just want to make sure she’s taken care of.
As of right now — there is no cure for Angelman Syndrome.
Even though there isn’t a cure, there is a lot of research currently being done. They are getting closer and closer to a cure and feel that it is on the horizon.
Robin and Kirk think that Ever is perfect and they couldn’t be more proud of her. They get asked if they hope there is a cure someday and Robin’s response was perfect:
“We think she’s amazing and we think she’s perfect. 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.”
Ever has a tough road ahead of her but her parent’s touching video below has everyone rooting for her.
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