0:00
Only 13 people in the world have my rare condition
0:04
He makes me look like I'm wearing a mask. We didn't know how long he's going to live or what kind of life he has to go through
0:13
We didn't know what to do. When I was younger, I had surgery on my eyes and my throat so I could speak and see easier
0:22
But we're 100% successful, so today I'm going to go see my doctor
0:27
I'm hoping there will be options for me. specialists, none of them have had to deal with a case like this
0:59
It's Mass Syndrome. So for my kids, it made my eyes very tiny
1:03
I cannot straighten all my fingers all the way. I can only straighten out these two fingers
1:09
And it also affected my throat. So that's why I found this way
1:13
I had a really hard time with how people couldn't understand me
1:17
That's one of the things that kind of frustrated me when I was growing up
1:22
Morning, Mom. How old were you when you were diagnosed with this syndrome
1:27
around the time I was in elementary school. I was rough, you know, I wasn't treated like other kids
1:34
So it kind of made me feel like, yeah, I'm kind of different from everybody
1:40
I had a lot of kids making fun of me sometimes. They don't usually see someone who looks like me all the time
1:46
Then as I got older, I realized, hey, like, this is how the world's going to be
1:51
I can't really change how other people think about how I am
1:54
My parents helped me a lot emotionally. Especially through all my surgeries
1:59
I had a couple surgeries when I was younger. They actually tried to do surgery on my eye but they couldn open it And then I had another surgery on my throat which is my palate because no one could understand
2:14
When he was born, we didn't know anything. We didn't know how long he's going to live or what kind of life he has to go through
2:26
I have no idea. He had to go through so many surgeries
2:30
I was like really heartbroken. I mean, at the beginning it was love
2:36
And I was like, yeah, why is all of this happening to me? But as I learned a lot of the way, this is going to be like the building blocks
2:45
This is what I'm going to be. I'm going to use this one day to inspire people
2:51
Unfortunately, sometimes people look at him or how he looks like. I saw a lot of time
2:59
He has struggled. He fights with those situations. I'm so proud of him that he never really complained
3:09
I think his mind from the beginning burns strong. Really not. As I look around, I see a lot of people complaining
3:18
Complaining about very small things about their lives. So I was like, alright, I'm going to take the example of a man who never complains about anything
3:27
He just moves with it. And that's what I want to teach my kids to do
3:32
If they have the same disability as me, like, you've got to go through life like a warrior
3:38
How important was it having your mom there for you through everything
3:42
Oh yeah, it was super important that she be there. You know, because who else am I going to go through it with
3:49
Thank you, Mom. Of course. My previous surgeries weren't 100% successful, so today I'm going to go see my doctor
4:04
I might ask him, hey, maybe you have another throat surgery, what you can do
4:08
Or another mouth surgery where I can open my jaw a little bit more What about your eye Yeah I might ask him about that too I hoping hoping you be awesome for me so I can speak and see easier
4:23
Hey! Hey! Long time no see! Long time no see! Good to see you
4:28
Yeah, good to see you! Yeah, good to see you! It's been a while. You're 21 now. Yeah
4:33
I was there from your first minute of being alive. Isn't that crazy
4:37
Why don't you hop on up and let's get started? Sure! Alright
4:41
How's everything going? Health-wise, are we doing okay? Yeah, everything's been doing alright. I've been doing a lot of workouts
4:48
I've been exercising a lot. It looks like it. Yeah, you're looking good. But you've had a long road, right
4:54
You've had to see a bunch of other doctors and a bunch of other specialists
4:59
You've had some surgeries too, right? Yeah, they were not so successful
5:03
So I'm hoping in the future there's going to be a surgery or something that we can do to fix that, you know
5:10
Yeah, yeah. Well, you know, your condition is so rare that I think a lot of this we're sort of learning as we go
5:19
And I think even for the specialists, none of them have had to deal with a case like this
5:25
So a lot of it is sort of new and experimental. Luckily, there's a lot of smart people out there doing research on this now
5:31
So, you know, hopefully we'll have some solutions, you know, coming our way. Yeah
5:35
But you know the amazing thing about you, buddy? You've got a great sense of humor about the whole thing
5:42
And that's how you've been from when you were young. And that's why I just enjoyed seeing you here in the office
5:47
I'm grateful. No, no, I'm grateful. So I learned a lot. I consider myself lucky to have met you and to have learned about this condition
5:58
Because again, there's not many doctors in this world that know about this condition
6:02
Keep in touch. I'm always here for you. Good to see you. You see what you got
6:06
You take care. Yeah. Thank you. If you're currently dealing with any type of low surface food or insecurity, then listen to this
6:15
So I started making Instagram videos back in 2024. And all my friends were like hey you really good at giving at body speed You good at giving inspiration to others So why don you start content creation And then I just started like going out the line from there
6:32
And it blew pretty quickly actually. Like within just a few weeks I had like 10,000 followers
6:38
I got a lot of comments on my team. People calling me different things
6:42
Like I get this one comment a lot. He is his final boss. And this one kind of makes me track of only because it's like
6:51
I really do look like an engine flying off. Buddy's an awesome person, awesome soul
6:58
The most impressive, I would say, is just his ability to just take whatever challenge and just go into it full steam ahead
7:05
How's this great? This is real great. How's that one? Yeah. This one good
7:12
Yeah. All the way in? Yep. Everybody's going to play a lot of different games, you know
7:18
One, two. Three. And the way I kind of learned is that you can do two things
7:25
You can do anything or you can kind of shave it off
7:30
and you're like, yeah, okay, you got your thing very much. Once you look at him, it kind of makes you go inside yourself
7:37
and kind of understand, like, none of us really have excuses. I was in awe from day one, and he earned my respect instantly
7:46
The way I'm approaching right now is not not merely a sense of pride or proudness, but more like I'm grateful
7:53
I'm grateful to have my career. I'm grateful to have, like, people around me
7:57
I'm grateful for everything that I've been put through. Challenges, obstacles, opportunities, whatever. I'm grateful
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Whatever makes you different, it brings you. Because that makes you who you are
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That's what's going to make you special. One final message I sing
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The universe is great, your life is great, and you are great
