3-year-old Ever Hisko is one of the happiest toddlers in the world, but behind her cheeky smile lays a very rare condition.
Ever’s parents, Robin and Kirk, first noticed that there was something wrong with their little girl when they first brought her home from hospital.
Mum Robin says, ‘There were no complications when Ever was born other than she came extremely fast.’
‘After we brought her home from the hospital, almost immediately she started having trouble. 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 seemed that nothing we did could make her happy.’
When she was just 3 weeks old, Ever was diagnosed with GERD, which is an extreme form of acid reflux. Thankfully, after she was given medication Ever made an almost instant recovery, transforming from an unhappy baby to a smiley little tot. But things weren’t all as they seemed.
Robin explains, ‘While Ever was happy and boyed, she was so happy at this point, it was almost too happy.’
‘She was definitely missing milestones so we started to brainstorm a little about whether this was just, ‘is she behind because she had such a rough first year of life? Or is she behind because of something else going on?’’
It wasn’t until just after Ever’s 2nd birthday family that her worried parents finally got some answers. Sadly, Ever was diagnosed with the extremely rare Angelman Syndrome.
Symptoms can include developmental delays, speech impairment, movement and balance problems, a happy demeanor, hand flapping and a short attention span.
Robin says, ‘Angelman Syndrome is a rare genetic neurological disorder that causes developmental delays and neurological problems.’
‘I’d never heard of Angelman Syndrome. It’s so strange to never have heard of something that in a minute can become your whole world.’
One of the most distinctive symptoms of Angelman Syndrome is the ability to function on next to no sleep.
Robin says, Sleep is our biggest struggle, mostly 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 that can be rough on us because we’re only human and we need to sleep and she doesn’t!’
‘If we can get anywhere from 4-6 hours out of her in a night we feel like we’ve done good.’
‘It’s amazing though, she can really just function on just no sleep at all and is still amazingly happy!’
Although currently there is no cure for Angelman Syndrome, Robin and Kirk remain hopeful that Ever will lead a full and happy life.
Robin says, ‘I worry that the world won’t always treat her nice and I worry that I won’t be here forever.’
‘You always hope that you’ll find enough people around you that love her to make sure she’s taken care of.’
‘She’s such a happy, gentle, sweet, amazing girl and nothing gets her down, and nothing stops her, and she never stops trying.’
‘People ask us if we hope for a cure. We do but maybe not for the reasons people think. 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. 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 at the end of the day.’
Watch the video above to see gorgeous Ever for yourself.