DONA KRYSTOSEK: Since birth we knew something
was wrong with Levi. You could tell that he had birth defects. It took a year to finally
figure out what he truly had.
LEVI KRYSTOSEK: I’m Levi Krystosek and I’m one in a million. My age is 11; I am 36 inches,
something around there. DONA KRYSTOSEK: 38.
LEVI KRYSTOSEK: 38 inches.
LEVI KRYSTOSEK: My condition is Jansen’s Metaphyseal Chondrodysplasia.
Hopefully I said that right.
DONA KRYSTOSEK: There’s about 30 known cases worldwide. There’s five genetically confirmed
cases in America. It’s a very rare form of dwarfism. The body does not process calcium
like it should, the bones get bendy and grow crooked we call them wonky bones.
DONA KRYSTOSEK: He wears these safety goggles
to protect his left eye. He has optic nerve atrophy.
DONA KRYSTOSEK: We take Levi to see many different
specialists, we see about eight different specialists.
DR. WILLIAM MACKENZIE: Hi Levi.
LEVI KRYSTOSEK: Hi. DR. WILLIAM MACKENZIE: How are you doing man?
LEVI KRYSTOSEK: Good. DR. WILLIAM MACKENZIE: Good to see you.
LEVI KRYSTOSEK BAC: Good to see you. DR. WILLIAM MACKENZIE: You brought your mother
along this time?
LEVI KRYSTOSEK: I always bring her along.
DR. WILLIAM MACKENZIE: You didn’t fly up by yourself this time?
LEVI KRYSTOSEK: No.
DONA KRYSTOSEK: When I was first given the diagnosis that Levi had Jansen’s Metaphyseal
Chondrodysplasia, the doctor came into the hospital room and said I need you to sit down.
And he sat me down and he told me what that Levi had Jansen’s and at first I said, ‘Are
you sure?’ because we had had several misdiagnosis and he said, ‘Yes for sure. It’s been
genetically confirmed by a blood sample.’ And I was relieved to have knowledge of what
he had, but then it made me sad because the more that the doctor explained what was going to happen...
DONA KRYSTOSEK: ...it was hard. It sounded very painful. I just knew at the moment that
I was going to do everything I could for him to get the best quality of life for him.
DR. WILLIAM MACKENZIE: So, how is it going?
LEVI KRYSTOSEK: Good. DR. WILLIAM MACKENZIE: Any problems?
LEVI KRYSTOSEK: Not lately, no.
DR. WILLIAM MACKENZIE: I’ve known Levi for eight years. I first met him when he was three.
Levi has several problems. The most obvious ones are his height and that won’t have
much of an impact on his life. But he has a scoliosis which is a curve in the back and
that can potentially cause a lot of issues and will likely need to be surgically treated
at some point. The most obvious deformities in his legs will be managed probably until
he is fully grown. I see you’re running pretty well -- really fast. Awesome, good
work, good work, let’s go back in here.
DR. WILLIAM MACKENZIE: So you know what, I think your legs are looking pretty good. Do
you think you can manage wearing a brace for a while, give it a shot?
DONA KRYSTOSEK: If his back was straight, would it help the leg?
DR. WILLIAM MACKENZIE: No.
LEVI KRYSTOSEK: I was just wondering -- do I have to wear it every night and every day?
DR. WILLIAM MACKENZIE: Yes. Yes we’d like you to, yes.
LEVI KRYSTOSEK: Every once in a while, probably take it off?
DR. WILLIAM MACKENZIE: Yeah, you will run around, or go swimming or play with your
friends; absolutely, you don’t have to wear it then.
LEVI KRYSTOSEK: When I see Dr. MacKenzie,
I sometimes have to do X-rays and other stuff, like, today they had to do a mould for a back
brace because my back is basically like a big S.
LADY: Okay, can I swing you so that I can
take a peek at your spine real fast?
DONA KRYSTOSEK: He is not allowed to jump. He has to be very careful. He has neck instability
so a simple headlock could be catastrophic for him.
LEVI KRYSTOSEK: How it makes me different
from the other kids at school is I can’t play contact sports because of my neck and my back.
DONA KRYSTOSEK: Levi has been known to get frustrated and upset. He tries to keep up
with his peers and he can’t keep up. I mean just his height can sometimes prevent him
from keeping up with his friends.
LEVI KRYSTOSEK: Luckily, when I can’t play, I’m used to it so much, I’ll just watch
or whatever. Mostly my friends at school, they’re like, okay you can’t do this,
what else can we do and we just think of something else that I can do.
LADY: All right, you think we’re good?
DONA KRYSTOSEK: Having a child with a medical
condition, it’s very expensive. With Levi, to travel to see some of these different doctors,
we have to fly out of town.
LEVI KRYSTOSEK: More speed, more speed.
DONA KRYSTOSEK: We were fortunate to find Miracle Flights. They fly sick children to
distant care and they have flown Levi 16 times, so far.
DONA KRYSTOSEK: I had a lot of questions.
When we found out that Levi had Jansen’s, I wanted to know what caused it, was there
a cure and there is not a cure for Jansen’s. Were there other cases, were their other children
that live nearby?
INTERVIEWER: Why do you like playing together? LEVI KRYSTOSEK: Because...
KID: It’s fun. KID: Because it’s fun and he is just like
us. We all have the same disease. LEVI KRYSTOSEK: Yeah, good point.
KID: It’s called Jansen’s. KID: Jansen’s Metaphyseal Chondrodysplasia.
LEVI KRYSTOSEK: Which they already know.
NEENA NIZAR: I’m Neena Nizar and I’m the president of the Jansen’s foundation. When
we realise that there was something wrong with the boys, you know, we got on the internet.
That’s when I came across Dona’s blog and I remember clicking on the link and the
first picture that popped up was Levi. It was like I was looking at myself, I was looking
at my kids. I knew, immediately, even before we got the genetic diagnosis that this was
the condition that the boy’s had.
NEENA NIZAR: When you have a condition so rare, it’s really important for the kids
to get together and as the boys themselves say, you know, ‘They’re like, we’re
like each other,’ so they play to each other’s strengths and weaknesses, they know each other really well.
DR. WILLIAM MACKENZIE: Levi has lots of things to look forward in life. I hope that he will
be an extremely functional young man who has a very successful life, but he will have challenges
along the way.
DONA KRYSTOSEK: My hopes for Levi in the future are that he grows up and he gets married and
I always joke and say, I want him to graduate high school, go to college and move out of
my house one day, I want him to be a normal happy, healthy kid. I want him to do as much
as he can do.
DONA KRYSTOSEK: Levi, do you know why you are so special?
LEVI KRYSTOSEK: Yes, because of my rare disease and there’s only five genetically confirmed in America.
DONA KRYSTOSEK: You’re one in a million.
LEVI KRYSTOSEK: Yes, one in a million.