MICHELLE KISH: Do people assume that I am a lot younger than I am? I think they do when
they ask my age. MICHELLE KISH: My name is Michelle Elizabeth Kish. I’m 20 years old. MICHELLE KISH: 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. MICHELLE KISH: I don’t know, Mom knows more about this than I do. MARY KISH: There is a spoil sport. COMM: 20-year-old Michelle was born with Hallermann-Streiff syndrome – a condition so rare, that at the time of her birth, there were only 250 known
cases of it worldwide. MICHELLE KISH: The most annoying thing is being small because there is a lot of rides
that I want to go on and like Six Flags and I can’t because they have some stupid
height restriction. Another annoying thing is that with my trach I can’t go under water
because I like to be a mermaid, I like mermaids. MARY KISH: 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 recognized 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. MICHELLE KISH: 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. MARY KISH: The symptoms of Hallermann-Streiff
syndrome, the main ones are that it’s a cranial-facial 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,
skin atrophy, alopecia, have I hit it all? I mean there is…
BRAD KISH: I think most of them, yeah. I can’t think of any. MARY KISH: Now Michelle is a 20-year-old young
lady; smart as a whip, happy as ever. She is one of the happiest 20 year olds I know. MICHELLE KISH: 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 is very cute. She is very lovable. She goes by me when I am sick. MARY KISH: Michelle struggles the most without admitting it – she is lonely. MICHELLE KISH: This is the first time I got a friend, to help me. SARAH KISH: That’s nice.
MICHELLE KISH: A friendly wizard. MARY KISH: Kids are nice to her but she has never really developed friendships, like,
let’s say her older sister has or kids her own age and she is just like any teenager
now young lady 20-year-old. She wants a boyfriend. MICHELLE KISH: Have I ever had a boyfriend? Nope. But I want one really bad. MICHELLE KISH: Because I am already 20 and
Sarah had her, like, first boyfriend at high school. I will look for in a boyfriend: long hair. MICHELLE KISH: Period! SARAH KISH: When Michelle talks about wanting a boyfriend, it’s interesting. I tell
her that it is not all is cracked up to be. It’s, kind of, sad that, you know, it’s,
I want her to have the same experience but, also, she is very, very confident and she
is a very strong, independent human. SARAH KISH: 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.
MICHELLE KISH: Yep! SARAH KISH: Do we ever annoy each other? MICHELLE KISH: Do we?
SARAH KISH: Do we? I think sometimes, like, normal sister stuff. Right?
MICHELLE KISH: Oh, yeah! MICHELLE KISH: Food stinks. SARAH KISH: Food stinks? MARY KISH: She lights up people’s life.
If someone is having a bad day, you don’t even have to say a word to her and she will
say, ‘Mom, are you okay? Is there something I can do? You know I love you.’ She knows
she is different but it doesn’t bring her down. COMM: Michelle’s family are currently facing
problems with new government proposals to change medical aid in the US. MARY KISH: Medicaid pays for her nursing.
Michelle requires private duty nursing in the home in order for her to stay at home,
meaning she needs 24-hour care. MARY KISH: This is Sophia as Michelle calls it instead of a ventilator. It’s not so
medical. MARY KISH: If they cut the waiver program that she is on, she will have to live in an
institution and Michelle wouldn’t thrive in an institution. MICHELLE KISH: Okay!
MARY KISH: Michelle puts her own ventilator on. MICHELLE KISH: Sophia. MARY KISH: Sophia. So, now she will be on it for a while. MICHELLE KISH: I get on at 03:02, shut it
off at 04:02. MARY KISH: Okay! Pop goes the ventilator.
MICHELLE KISH: Sophia! MICHELLE KISH: My dream job is being a paediatric doctor in a year and I have got two back-up
jobs just in case they don’t work. I want to be a fashion designer like on my favourite
computer game ‘Barbie’s Fashion Show’ and I want to be an actress. SARAH KISH: Every time I introduce Michelle
to a new friend, they immediately think she is really sassy and really funny. But they
love that about you. MICHELLE KISH: I am not sassy.
SARAH KISH: Oh, you are very sassy. MICHELLE KISH: No, I am not.
SARAH KISH: Okay, okay. But they love that about you and they end up liking you more
than me. No, I am just kidding. MARY KISH: Michelle’s long-term outlook or prognosis is unknown at this point. We
have had several close calls. Overall she is fairly healthy with all the maintenance.
She is just a happy child, young lady. BRAD KISH: She is tough as nails. MICHELLE KISH: I think I am different from the average 20-year-old but that’s okay.