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