00:00My name's Levi.
00:01I'm Levi Kostasic, and I'm one in a million.
00:03And I'm still one in a million.
00:06My super rare type of dwarfism meant I had to relearn how to walk
00:10three different times after my major surgeries.
00:13The spine and leg surgeries were painful and hard.
00:16He had his femurs.
00:17They cracked them both and put rods in.
00:19It was grueling.
00:20The bottom of your legs were just so...
00:23It was hard to watch you go through that.
00:30You're winning already.
00:35My name is Levi Kostasic.
00:37I have Janssen's medical seal chondrodysplasia.
00:42That's hard to pronounce.
00:44There is 28 cases, I believe, in the world.
00:48When I was previously shown on Born Different, I was 11, and now I'm 18.
00:53So it's been a while.
00:54I am 36 inches.
00:57Something around there.
01:0038 inches.
01:01Last I checked, I think I was 4'1", so I'm up there, right?
01:07So with having J&C, I can wear normal-sized shirts.
01:13I can wear normal shorts.
01:15These are just basketball shorts.
01:18With the jeans, I have to have them hemmed.
01:24I keep most of my stuff in my front pockets, just because my arms are short
01:28and it's hard to reach the back pockets.
01:31The best way to explain Janssen's medical seal chondrodysplasia is
01:35the calcium is in the blood if the bones just don't soak it up.
01:40It affects every bone in Levi's body.
01:43Mentally, he's sharp as a tack, and he's outgoing and bubbly.
01:47But head to toe, it affects everything.
01:49His teeth, his smile, his ears, his sight.
01:53It's been a learning process from day one of not even having a doctor.
01:58It took us a while to find a doctor that had ever even treated his condition.
02:02When Levi was diagnosed with Janssen's metaphyseal chondrodysplasia, I was terrified.
02:07More than the doctor explained what was going to happen.
02:13It was hard.
02:15It sounded very painful.
02:17It's degenerative, so since the last interview seven years ago,
02:21Levi's had his eardrum reconstructed twice.
02:24He's had rods in his back, and he's had two different leg surgeries.
02:28One, they even had to break his femurs and set him with rods.
02:31What happens is the bones grow what we call wonky,
02:34and so the bones have to be corrected.
02:39I got you a burger just how you like it, some fries, some ketchup.
02:44Well, I hope it tastes as good as it looks.
02:46I want to say I'm close to 20 or 23 surgeries.
02:51The spine and leg surgeries were painful and hard.
02:55They were going to do his upper legs and his lower legs all in one surgery.
02:59That's breaking the femur in two spots, putting plates and rods in,
03:04and Donna and I sat in the waiting room.
03:06We were the last people there.
03:07It was like 9 o'clock at night, and they finally came out,
03:10and they said, well, we're done with half.
03:13We said, what?
03:14And they said, we're done with half.
03:15It's too much.
03:17He needs to recover for a few weeks, and then we'll do the other half.
03:20At the end of that surgery, the anesthesia had really got to him.
03:24He ended up in the ICU.
03:25At that point, your femurs were straight.
03:27And because they were straight, the bottom of your legs were just so-
03:31Were turned in, yeah.
03:32Yeah, they were.
03:32His feet were turned in like that.
03:34You wouldn't have been able to even walk.
03:36It was hard to watch you go through that.
03:38Every time you have a major surgery, whether it be a spine surgery or a leg
03:41surgery, you have to learn how to move your legs again.
03:44So I had to relearn how to walk.
03:47I think I've relearned about three or four times.
03:51We had to go back for two months of inpatient rehab.
03:54And it was very, it was grueling.
03:56They had him in the aqua therapy and
03:58then the gym twice a day to get him back on his feet.
04:02Do I have any more surgery showing up?
04:04As of right now, no, thankfully.
04:07And hopefully that stays that way for a little bit,
04:09because surgery can be annoying at times.
04:11But it's part of it, so yeah.
04:15This condition has been around for over 93 years, and
04:19the needle has not moved forward towards a cure until three years ago.
04:24You look so cute, yes, you do.
04:26Levi was the first patient with Janssen's mephistyle chondrodysplasia
04:31that was admitted to the NIH for research.
04:34So the way I feel about that is ecstatic because 52 years is not long enough.
04:40And unfortunately, the oldest living Janssen's mephistyle
04:44patient made it to 52, and Levi needs to live to 104.
04:48The drug trial's gonna be a three-month drug trial, but he's ready.
04:52He's mentally prepared.
04:53You're about to find out.
04:54I think he's trying to have as much fun as possible because he's
05:00gonna be in the hospital for three months, so he's wanting to do as much as he can.
05:07Is that the right height?
05:09Perfect.
05:10Perfect.
05:11Levi has optic nerve atrophy, which means that he can't really see out of that right
05:16eye, and we don't know if his vision's gonna get worse in time.
05:20So my husband and I, we wanna show Levi everything that he can experience in
05:24the great outdoors.
05:25We like to fish a lot.
05:26So the way we kinda work Levi's schedule is he does his schooling from home.
05:32He does everything virtually.
05:33So the days that I'm working, he's doing school.
05:36The days that I'm off, we're out playing.
05:39Boom!
05:41Nice!
05:42Oh, oh, oh, what you got?
05:44I like to go out and fish and be outside, and I do a lot of social media,
05:50one, for fun, and two, for spreading awareness.
05:53So that's always been fun and giving me a lot of opportunities to do different
05:58things, which I'm greatly thankful for.
06:01What we're trying to do with our personal GoFundMe is to raise funds to travel to
06:07different states so Levi can catch a fish in every state.
06:11That is one of his things that he wants to do, and Joey and I both have always
06:15said anything is possible, and if you have a dream, you can achieve, and to go
06:19live life.
06:20So that's what we wanna do for Levi.
06:22Would I describe Levi as adventurous?
06:24Here we go!
06:25Of course, Levi has no fear, always wants to be part of the action.
06:30It's always a challenge getting him in and out of the boat.
06:33We use cushions and stuff like that.
06:35It sits on a cushion so he can see when he's driving.
06:38Driving the boat, that sometimes freaks people out because they think it's a little
06:41bit of kid.
06:42They're like, no, he's old enough, he drives the boat.
06:45Watch him fishing poles.
06:49People with JMC or people with dwarfism in general are just the same as other people.
06:55We're all going through something, whether you're tall, whether you're short, etc.
07:00We're all just people.
07:02Alright, let's catch some fish.
07:05I kind of look at Levi's life as he has a lot of fun, but he also goes through more
07:12than I could ever imagine.
07:13He just plows on through, keeps going, and usually with a smile on his face.
07:18He never complains, it's never, oh, poor me.
07:21So I'm very proud of Levi for how he has handled all the challenges.
07:26If I had to describe Levi in just one word, he's a fighter.
07:30This condition probably picked the strongest kid to head up on.
07:33You got any advice for people that have to go through stuff like this, what could you
07:36tell them?
07:37Just push through it.
07:40Push through it, that's it.
07:41What do you hope for Levi in the future?
07:43I hope that he gets married, well, wait, moves out, and meets somebody that makes him as
07:51happy as his father makes me.
07:54Ditto.
07:55I hope for a lot of things.
07:56We'll see what happens.
07:57Hopefully we can get this drug trial going and, you know, keep on pushing.
08:03We'll see what happens.
08:04We'll see what happens.
