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
她还患有胃食管反流症 一种胃酸逆流的疾病的极端形式 在经过合适的药物治疗后
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!
她这时真的很快乐 但是还是有点过头 她绝对迷失了里程碑
She was so happy at this point that it was almost too happy, but she was definitely missing milestones.
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,
我们只是普通人 需要睡眠 但是艾佛不需要
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
尽管这让人很吃惊 她确实能不睡觉一直活动 而且还一直很快乐
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.
ROBIN HISKO: I worry that the world won’t
仁慈地对待她的 我也不能永远留在她身边 因此如果是你 你会希望
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,
甜美 还有惊人的女孩 没有什么让她难过 也没有什么能够阻止她 她永远不会停止尝试
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
我们确实期待 但是原因并不是像人们想的那样 我们认为艾佛很让人惊讶
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.
可是 她很快乐 这也是在一天中我最想要的
However, she is happy, so that’s all I ever want at the end of the day.