The Girl Who Sleeps One Hour A Day
29
August

By Adem Lewis / in , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , /


ROBIN HISKO: People were, I think, just hoping that everything was okay because she is so
happy, but it was almost too happy. ROBIN HISKO: There were no complications when Ever was born other than she came extremely fast. ROBIN HISKO: 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. COMM: Parents Robin and Kirk noticed that something was wrong with their daughter Ever from the moment they brought her home from the hospital. ROBIN HISKO: We immediately felt like we were doing something wrong. It just seemed that
nothing we did could make her happy. We felt like, we must be doing it wrong. Her main
hospital visit occurred at three weeks. She ended up staying at The Children’s Hospital
of Eastern Ontario. We found out that she had GERD which is an extreme form of acid
reflux and once we got on the proper medications, her feeding, everything just calmed down,
she became a lot happier. ROBIN HISKO: Well, Ever was happy and, boy! She was so happy at this point that it was almost too happy, but she was definitely missing milestones. KIRK: Ever! ROBIN HISKO: So we started to brainstorm a
little about whether this was just, is she behind just because she had such a rough first
year of life or is she behind because there is something else going on. COMM: But it wasn’t until just after her second birthday that they finally got some answers. ROBIN HISKO: I’ve never heard of Angelman Syndrome. It’s so strange to never have
heard of something that in an instant can become your whole world. ROBIN HISKO: Angelman Syndrome is a rare genetic neurological disorder that causes developmental
delays and neurological problems. ROBIN HISKO: It used to be called happy puppet syndrome. It’s still considered extremely
rare. It’s one in about 15 to 20,000 live births. KIRK: Are we in the pool together, are we having fun in the pool? Come hug. COMM: One of the main symptoms of Angelman Syndrome is the ability to function on minimal sleep. ROBIN HISKO: Sleep is our biggest struggle mostly because Kirk and I are the primary
care givers. ROBIN HISKO: We don’t get a lot of sleep and, you know, we try to be there all the
time. So we find that can be rough on us, because we’re only human and we need to
sleep. And she doesn’t. But if we can get anywhere from 4 to 6 hours out of her in the
night, we feel like we have done good. It’s amazing though. She can really just function with like no sleep at all and is still amazingly happy. ROBIN HISKO: Ever was over two years old and still had never spoken a word. We were really
curious to know if she would ever speak, which we were told that she may never. But we think
she is going to. KIRK: Look at the camera and action. And action! ROBIN HISKO: I worry that the world won’t always treat her nice and I worry that I won’t
be here forever. So you always hope that, you know, you’ll find enough people around
you that love her to make sure that she is taken care of. ROBIN HISKO: Currently there is no cure. However, currently there is so much research and so
many scientist working towards a cure, there has been all kinds of breakthroughs happening
the last few years and they feel a cure is on the horizon. We are very excited for that
possibility. ROBIN HISKO: She is such a happy, gentle, sweet, amazing girl and nothing gets her down and nothing stops her and she never stops trying. ROBIN HISKO: People ask us if we hope for a cure. We do, but maybe not for the reasons
people think. We think she is amazing and we think she is perfect. But why we would
want to 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. However, she is happy, so that’s all I ever
want at the end of the day.


100 thoughts on “The Girl Who Sleeps One Hour A Day

  1. I give kudos to all people who have kids with disabilities my brother has ADHD and even that takes a lot of time and patience these parents are a god send 💕

  2. Me: watching video
    My brain: See's the same bouncer that my brother has
    bruh you gotta comment
    Me: why?
    My brain: I dunno just do it
    Me: legit

  3. Wow, that must be really tough for the baby and the parents who has a kid that only sleeps 1 hour a day😥😥😥

  4. She sleeps once a day: Hasn't got a tiny eyebag

    I sleep 15 hours a day: Where all the plastic bags disappear to

  5. My 2nd grade teacher has a daughter with this. She made this walk where a bunch of people would get together and families that had people with this came as well and we walked and hopefully raise enough money to help get a cure for this ❤️ I’m in high school now but I still attend the walk because her daughter is so sweet and I love their family

  6. She has the opposite. I feel sick if I don’t sleep at least 10 hours. Given the opportunity I will sleep 12.

  7. She only sleep for an hour a day how is that possible? If i sleep for less than an hour I become very cranky

  8. I know nothing about your daughter's condition, but there's two things that I do know. Sign language is easier to learn than speaking. Babies as young as three months old can use basic signs to communicate food, mama, dada etc. It really helped my neighbor's son with downs syndrome. The other thing is give her a reason to communicate. Don't always ask yes or no questions. My bff's son, perfectly normal, only child, had his every need provided, sometimes before he even knew he wanted it. He was a late talker because he didn't need to talk. A look or grunt or scream was all he needed to communicate. You have good instincts, keep following your gut. ❤🌅🌵

  9. Putting an infant on medication makes me sad and angry, thats stupid incompetency on account of a little angel,
    Her gut flora is destroyed, she needs Probiotics to build it up again. And for f****s sake dont feed her the garbage doctors recommend, DONT EVER let her get vaccinated, this will destroy her immune system.

    Please If you love your kid inform youself.
    Dr John Bergman, will open your eyes. You may not know him, but he is one smart doc.

    https://www.youtube.com/watch?v=iq4mvgFIUb8

    Dont let your kids suffer!!

  10. I feel your pain. My son has severe non-verbal autism. He's 23. He spoke until 16 months and hasn't spoken since. He was recently diagnosed with epilepsy and lack of sleep is a trigger. He has nights where he doesn't sleep at all and it's really frustrating and exhausting, but some nights he sleeps well. We love him just the way he is. We are realistic and don't know if we will see a cure in his lifetime. We just try and make his life the best that it can be. He is very happy and lovable and that makes me happy.

  11. Ever’s got this lost and confused look in her eye. I can see she’s in there.

  12. My cousin has Anglemans syndrome, she just turned 20 last week! Despite being nonverbal she never stops smiling and being the happiest girl in the world!!!

  13. Such a sweet heart, one day I hope the successful cure will be made soon
    So she can get some sleep and so she can talk

  14. So cute. Such a happy little girl. She’ll have a wonderful life ahead of her whether or not she’s cured. She’s got a loving family and that happy demeanour!

  15. I helped at a YMCA for school, the one little boy that was there and he had this, he was so nice.

    This little girl is so happy 😁 Even it she can’t speak, hearing that laugh and seeing that beautiful smile would make anyone’s day.

  16. So sweet and such an amazing little girl who is so happy and smiley I’m so grateful to have seen this video❤️

  17. Damn she’s really cute! At least according to what I read in some of the details on the screen in this video with 1 of the symptoms of this “Angelman Syndrome” “disorder” being that she’s extremely happy much of the time can be an “Ability” rather than a “Disability” because at least that’s something positive that she’s pretty much always happy and smiling and everything like that and with that in mind I actually envy her for that particularly-related aspect of her “Disorder” compared to my chronic depression that is 1 of the disadvantages of my Autism(even though being on the spectrum in and of itself for me personally overall is actually a rather-equally positive quality I realize) but either way she really truly is an absolutely wonderful girl!😊

  18. Any time someone is born with something rare and benefical like the ability to function on very little sleep it seems to come with a whole host of other problems

  19. She is so cute and u guys are doing great I have a sister who has sn she is the best but people are always gonna be assholes but there are more people who understand and are kind and that is what matters , she is gonna be great and I'll be there too cuz I know she's gonna be excellent! Keep it up , xx💜💜💜💖💖

  20. My son is autistic and takes melatonin. It’s with a doctors certificate. My goodness the difference it’s made. Maybe she’s autistic. My son was also happy all the time, he never cried,still doesn’t. I’d love an update.

  21. This is why genetic testing should be affordable. Your insurance should provide a night nurse for you. Sleep deprivation is horrendous.

  22. I don't know but i can literally sleep for only an hour and start the day same as if i slept for 6+ hours. As a kid and untill now i hated going to sleep. Probably because i have horrifying dreams. But my hands don't spazz like her's and and im never… I mean never happy.

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