I’m Not A Child, I’m 20 | Living Differently

People assume that I am a lot
younger than I am. I think they do, when
they ask my age. Your turn… GAME BUZZER THEY LAUGH VOICEOVER: My name
is Michelle Elizabeth Kish, I am 20 years old. I have a condition called Hallermann-Streiff syndrome. It has 28 characteristics, I have 26 of them. The two that I don’t have
I think are brain problems or…something. Yay! I don’t know, Mom knows
more about this than I do. There’s a spoilsport. The most annoying thing is
being small, because there’s a lot of rides that
I want to go on, at, like, Six Flags, I can’t because it has a
stupid height restriction. Another annoying thing is that with this I can’t go underwater, because I like to be a mermaid.
I like mermaids. When I was pregnant with Michelle,
everything was normal. There was no issue at all through
the pregnancy or through the delivery. Michelle was
diagnosed by a geneticist. She had recognised the syndrome from pictures in her medical books, but no-one had ever
seen it in person. The fact that my child had a
rare genetic disorder that was one in five million, and occurred only every five
generations, I was pretty much devastated. I do have to go into
the hospital, like, a lot. I can’t count how many times. But a lot! It’s like my second home, basically. The symptoms of Hallermann-Streiff
syndrome, the main ones, are that
it’s a craniofacial disorder. Bilateral cataracts,
frontal bossing of the forehead, a recessed chin, small
beak-like nose, a small airway. Stenosed ear canals,
and dental anomalies. Michelle also got some of the
secondary characteristics, like dwarfism, cardiomyopathy,
chronic pulmonary lung disease, microgastria, fragile bones, um… Skin atrophy, alopecia… Have I hit it all?
I mean, there’s… You’ve hit most of ’em, yeah.
I can’t think of any. Now Michelle is a 20-year-old
young lady, smart as a whip, happy as ever, she’s one of the happiest
20-year-olds I know. My favourite things to do are playing on my computer, watching TV, playing on my iPad,
playing with my dog, Piper. I got my dog three years ago. She’s very cute. She’s very lovable. She goes by me when I’m sick. Michelle struggles the most, without
admitting it – she’s lonely. This is the first time
I got a friend to help me. That’s nice. A friendly wizard. Kids are nice to her,
but she’s never really developed friendships like, let’s say,
her older sister has, or kids her own age. And she’s just like any teenager,
now young lady, 20-year-old – she wants a boyfriend. Have I ever had a boyfriend? Nope. But I want one really bad. Cos I’m already 20, and Sarah had
her, like, first boyfriend in high school. I would look for, in a boyfriend, long hair. Period. When Michelle talks about wanting
a boyfriend, it’s interesting. I tell her that it’s not all it’s
cracked up to be. It’s kinda sad, but, you know, I want her
to have that same experience, but… ..also she’s very,
very confident, and she’s a very strong, independent human. Michelle was sick a lot
when we were younger so we didn’t get to hang out
AS much, but as we grew up – right? –
we hung out more. Yep. Do we ever annoy each other…?
Do we? Do we? I think sometimes, like normal
sister stuff. Right? Oh, yeah. The food stinks. The food stinks? She lights up people’s life. If someone’s having a bad day, you don’t even have to say a word to
her and she’ll say, “Mom, are you OK? “Is there something I can do?
You know I love you…” She knows she’s different.
But it doesn’t bring her down. Sophia is a ventilator, it helps me breathe for an hour. I call her Sophia, cos…
INDISTINCT OK… Michelle puts her own
ventilator on. Sophia. Sophia, so now she’ll be
on it for an hour. I got on at 03:02, so I’ll get off at 04:02. OK… BEEPING
Oops! Sorry. Pop goes her ventilator. Sophia…! My dream job is being
a paediatric doctor in an ER. And I’ve got two backup jobs,
just in case they don’t work – I want to be a fashion designer, like on my favourite computer game
Barbie Fashion Show, and I want to be an actress. Every time I introduce
Michelle to a new friend, they immediately think she’s really
sassy and really funny. Um… But they love that about you.
I’m not sassy. Oh, you’re very sassy. No, I’m not! OK. OK. But they love that
about you, and they end up liking you more
than me. No, I’m just kidding! Michelle’s long-term outlook or
prognosis is unknown at this point. We’ve had several close calls. Overall, she’s fairly healthy
with all the maintenance. She’s just a happy child.
Young lady. She’s tough as nails. I think I’m different
from the average 20-year-old, but…that’s OK.


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