LAST TIME "one in a million" Levi featured on Born Different, he was 11 years old. Now, having just turned 18, truly returned to catch up with Levi and his parents, Dona and Joseph. Born with an ultra-rare form of dwarfism called Jansen's metaphyseal chondrodysplasia (JMC), Levi's bones throughout his body are affected - as mom Dona describes it: "The bones grow what we call 'wonky'." As a result, in the years since we last saw Levi, he has had major surgeries to his spine and legs that were "painful and hard." One of the surgeries even involved breaking his femurs to fit metal rods and fuse his legs straight. Levi has faced many months of gruelling post-surgery rehabilitation and even had to learn to walk again "3 or 4 times." But Levi has overcome all these challenges and an upcoming drug trial offers renewed hope for his future and the future of other people living with JMC. While he waits, he is busy enjoying the outdoors - and, being a keen fisherman, a GoFundMe has been set up to help him achieve his dream of catching a fish in each of the 50 US states. Despite the "degenerative" nature of Levi's condition, his dad, Joseph, points to the fact that "he never complains, he just ploughs on through... And usually with a smile on his face." And you would not bet against Levi's defiant promise to "keep on pushing" - as Dona states: "He's a fighter. This condition probably picked the strongest kid to head up on."
Donate to Levi's GoFundMe: https://gofund.me/b9bed96a
Follow Levi:
https://www.youtube.com/LittleLevi
https://www.instagram.com/golittlelevi
https://www.tiktok.com/@golittlelevi
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Donate to Levi's GoFundMe: https://gofund.me/b9bed96a
Follow Levi:
https://www.youtube.com/LittleLevi
https://www.instagram.com/golittlelevi
https://www.tiktok.com/@golittlelevi
https://www.facebook.com/littleLevi
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FunTranscript
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.