Latest / Tom's Hirschsprung's Podcast / Episode 141 - With Da'Veon and Vonney

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Episode 141 - With Da'Veon and Vonney · Tom's Hirschsprung's Podcast

• 0:02
  Speaker 1: You are listening to Tom's Hirschsprungs podcast, a space where
• 0:05
  Speaker 1: we talk openly about living with Hirschsprungs disease. Whether you
• 0:09
  Speaker 1: live with it, care for someone who has it, or
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  Speaker 1: just want to understand more, this podcast is for you.
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  Speaker 1: Each episode we will explore real stories and honest conversations
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  Speaker 1: about a condition that often goes unheard. Thank you for
• 0:22
  Speaker 1: tuning in. Hello and welcome to episode 141 of Tom's
• 0:50
  Speaker 1: Hirschsprungs podcast. I am very glad this evening to be
• 0:54
  Speaker 1: joined by Davion and Vonnie. Vonnie will be joining us
• 0:58
  Speaker 1: hopefully at some point a little bit later, but welcome
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  Speaker 1: to the podcast, Davion.
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  Speaker 2: You very much i'm happy to be here and um
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  Speaker 2: i'm happy to be talking about my situation and i'm
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  Speaker 2: happy to spread light on um the hearse anybody that
• 1:12
  Speaker 2: has hearse rungs or anybody that's scared to to let
• 1:16
  Speaker 2: the world know because i mean i was scared to
• 1:18
  Speaker 2: let the world know at the end of the day
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  Speaker 2: like i was i was really afraid and you know
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  Speaker 2: i still am but at the end of the day
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  Speaker 2: it takes courage it takes real courage to be able
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  Speaker 2: to step out of your um comfort.
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  Speaker 1: Zone so yeah Yeah, fantastic. No, thank you so much
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  Speaker 1: for coming on. And obviously you have Hirschsprungs, as do I.
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  Speaker 1: Hence why you're here.
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  Speaker 2: Yeah, hence why I'm here. I had Hirschsprungs when I was,
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  Speaker 2: I think I was, when I was, well, okay, so
• 1:49
  Speaker 2: this is how it goes. This is how it went.
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  Speaker 2: So I was born in Norman, Oklahoma. And at that time,
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  Speaker 2: I was born in 2005. Um, at that time, Norman
• 2:01
  Speaker 2: was not, they, they did not have any gastrointestinal doctors.
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  Speaker 2: They didn't have no type of doctors that could help, um,
• 2:09
  Speaker 2: or be in any type of, um, that it was just,
• 2:13
  Speaker 2: it really just wasn't, it wasn't, they didn't have any
• 2:17
  Speaker 2: stomach doctors, basically what I'm trying to say. They didn't
• 2:19
  Speaker 2: have no stomach doctors, you know? So, so, uh, a
• 2:25
  Speaker 2: lot of the time, it was just a bunch of
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  Speaker 2: people that was saying, oh, well he might be sick
• 2:30
  Speaker 2: or he might. Cause I, I didn't initially, I didn't
• 2:33
  Speaker 2: use the bathroom for about four months. I didn't take
• 2:36
  Speaker 2: a stool. Yeah. Like I didn't use the bathroom. I
• 2:40
  Speaker 2: probably urinated, but I didn't take like, it was out
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  Speaker 2: the back, like for five or four months. So my stomach,
• 2:48
  Speaker 2: so in that four or five month span, my stomach,
• 2:51
  Speaker 2: the stool inside my stomach was getting very hard. It
• 2:54
  Speaker 2: was hardening up. And it would smell really bad, like
• 2:57
  Speaker 2: whenever it would smell terrible. So then I think, who
• 3:07
  Speaker 2: said that I should go and see a doctor? About what? About,
• 3:12
  Speaker 2: remember when my stomach was getting really, my Nana Marla,
• 3:18
  Speaker 2: she told my mom, That my stomach was, yeah, distended.
• 3:25
  Speaker 2: It was big. It was distended. I told you she
• 3:29
  Speaker 2: know all the medical situations and all the medical terminology.
• 3:34
  Speaker 2: But distended. How cool is that? It is. It's just distended. Distended. Okay.
• 3:44
  Speaker 2: That's why I need you here. You got a long hair. Um,
• 3:50
  Speaker 2: so yeah, it was, you know, so we had the,
• 3:53
  Speaker 2: we had to do that. And so we went and, um,
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  Speaker 2: the Oklahoma doctors, they checked me and they were like,
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  Speaker 2: oh yeah, this is severe. Like this is severe. So they, um,
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  Speaker 2: took me on a, uh, survive alive, um, helicopter. Survive
• 4:10
  Speaker 2: alive is basically like, um, hold on my weight. Let
• 4:13
  Speaker 2: me get my phone right quick. Yeah, my phone. Ma,
• 4:19
  Speaker 2: you got my phone. You got my phone. Thank you.
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  Speaker 2: All right. So, basically, because I want to pin out with,
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  Speaker 2: I don't know if you know what, like, Survival Live is,
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  Speaker 2: but it's basically like an emergency line, basically, where I
• 4:45
  Speaker 2: had to get on the Red Cross helicopter. And I
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  Speaker 2: had to ride from the Oklahoma hospital helipad on top
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  Speaker 2: of the hospital to the Wisconsin helipad. So it was
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  Speaker 2: probably like, let me see. A helicopter ride was probably
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  Speaker 2: like two hours, hour and a half. So, so, I mean,
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  Speaker 2: it was, it was far, you know, it was far
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  Speaker 2: and it was hard, but, um, so then they, they
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  Speaker 2: found out what I was doing through and, What was it?
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  Speaker 2: I had surgery when I was in Wisconsin. What kind
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  Speaker 2: of surgery did I have when I was in Wisconsin?
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  Speaker 2: You had a reversal. I had a reversal surgery when
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  Speaker 2: I was in Wisconsin. I had a reversal surgery. They
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  Speaker 2: basically took out some of my colon, cut my colon,
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  Speaker 2: cut a part of my colon, put it inside out,
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  Speaker 2: and put it back inside of me. And I actually have...
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  Speaker 2: I have this right here.
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  Speaker 1: Ah, yes.
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  Speaker 2: Five months. This is from five months. So it warped
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  Speaker 2: and distended and stuff of that nature. And so I
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  Speaker 2: had that. And then let me see. So then I
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  Speaker 2: had got cost me bags. Then I had got Colostomy bags,
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  Speaker 2: and they were terrible. Like, no one wanted to watch me.
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  Speaker 2: You know, my mom was the only person that was
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  Speaker 2: watching me, and nobody knew how to change the bags.
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  Speaker 2: The bags would stink all the time, and she was
• 6:33
  Speaker 2: changing the bags. And my dad tried to help, you know,
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  Speaker 2: a little bit, but he really didn't really know how,
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  Speaker 2: you know what I'm saying. So, yeah. I went from,
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  Speaker 2: what did I go from the Klossmy bags? I went
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  Speaker 2: from the Klossmy bags to, what did I go? What
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  Speaker 2: else did I go after the Klossmy bags, ma? After that,
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  Speaker 2: you just wore diapers. Oh, yeah. So, so, so, after
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  Speaker 2: the Klossmy bag, I probably got off the Klossmy bags
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  Speaker 2: when I, when I got off the Klossmy bags, like at, what,
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  Speaker 2: five or six, maybe? Mm-hmm.
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  Speaker 3: You had the Klossmy bag until you was maybe like
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  Speaker 3: three or four.
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  Speaker 2: Three or four? I had to close my bag when
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  Speaker 2: I was about three or four. And then after that,
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  Speaker 2: I went to diapers. And I had diapers until I
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  Speaker 2: was about 16. Yeah, I had diapers until I was
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  Speaker 2: about 16. My high school career was very, very difficult.
• 7:39
  Speaker 2: I'm not even going to lie. It was very difficult.
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  Speaker 2: It was very because I couldn't. I couldn't go to
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  Speaker 2: certain bathrooms. They had, like, diapers laid out for me.
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  Speaker 2: I couldn't feel when I was using the bathroom, so
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  Speaker 2: I used the bathroom by myself in class. And what's
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  Speaker 2: that smell? You know what I'm saying? So then I
• 7:59
  Speaker 2: had to go and go into, you know what I'm saying,
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  Speaker 2: the teacher's bathroom, changing the teacher's bathroom, getting a shower
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  Speaker 2: in the teacher's and the gym bathroom. I had to
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  Speaker 2: change clothes. I had to change the diapers and the
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  Speaker 2: It was just like, yeah, yeah. I had him in
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  Speaker 2: the nurse's office and it was just, it was just like,
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  Speaker 2: people made fun of me. I mean, people didn't know
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  Speaker 2: that I did it initially. I mean, people don't know now,
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  Speaker 2: but who cares? You know, I'm a grown man. But
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  Speaker 2: initially it was very, what do I want to say?
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  Speaker 2: It made me feel very sheltered. Like it made me
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  Speaker 2: feel like introverted. I had nobody to really talk to
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  Speaker 2: about it because you know, everybody would just... First of all,
• 8:44
  Speaker 2: even though nobody would know, nobody would understand. Because they'd
• 8:47
  Speaker 2: be like, you shit on yourself? You know what I'm saying?
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  Speaker 2: But it's like, I'm sorry. I'm sorry.
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  Speaker 1: No, but she looked like it's all good.
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  Speaker 2: Okay, okay. But yeah, I give my mom a chance.
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  Speaker 2: She's like, oh, okay. You know, people's like, yeah, you
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  Speaker 2: was in the bathroom with yourself. No, I didn't say
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  Speaker 2: you was. Oh, I just said that. You know what
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  Speaker 2: I'm saying?
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  Speaker 3: You.
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  Speaker 2: Okay, don't matter. He was like, you was in the bathroom?
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  Speaker 2: That's what they would say. But my friends, my closest friends,
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  Speaker 2: I had like three closest friends, they didn't know, but
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  Speaker 2: they knew that I had a condition. So they knew
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  Speaker 2: that I had to be changed and all that. I
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  Speaker 2: was so cold, for real. My mom was so cold,
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  Speaker 2: I had to shut it up. Nobody in school knew
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  Speaker 2: that I had diapers. But the thing was, I went
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  Speaker 2: to a... A predominantly white school. So that's why I
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  Speaker 2: kind of felt introverted and sheltered because, you know, you know, because,
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  Speaker 2: you know, I was black. You know, people didn't really,
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  Speaker 2: first of all, people didn't really talk to me like that.
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  Speaker 2: And second of all, when I tried to, even some teachers,
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  Speaker 2: like some teachers didn't even understand. you know so it
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  Speaker 2: was just like at the end of the day it
• 10:04
  Speaker 2: was like so yeah but like now that I'm now
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  Speaker 2: that I'm in like in an adult and I'm in
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  Speaker 2: college and I've actually been working on myself, and I've
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  Speaker 2: been changing my diet a lot. That's the first step
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  Speaker 2: to building Kegel muscles is the change of the diet.
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  Speaker 2: The change of the diet because, I mean, all this
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  Speaker 2: really stems down to keeping up with your colon health.
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  Speaker 2: You know what I'm saying? Keeping up with your colon
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  Speaker 2: health and, you know what I'm saying, putting, yeah, understanding
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  Speaker 2: your body. Stimulation. what you can eat and what you
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  Speaker 2: can't digest and, you know what I'm saying? And really
• 10:50
  Speaker 2: being in tune with yourself. And, and I, I, um, uh,
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  Speaker 2: in school, I, I, I study, um, gastrointestinal, um, the
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  Speaker 2: gastrointestinal tract and, um, and that type of stuff. But
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  Speaker 2: I also study, um, the, the meditation and I study
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  Speaker 2: being Zen and I, and I studied just being one
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  Speaker 2: with yourself, making sure that, um, you know, that, you know,
• 11:16
  Speaker 2: you know, medicine is always good, but also, you know, knowing,
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  Speaker 2: you know, yourself, not having somebody else like a doctor
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  Speaker 2: or somebody to let you know, you know, how to
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  Speaker 2: go about fixing your body. You know what I'm saying?
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  Speaker 2: Like they tell you, yeah, healing yourself. You know what
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  Speaker 2: I'm saying? So at the end of the day, you know,
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  Speaker 2: my standpoint on that is you, we in ourself have
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  Speaker 2: the power to know what's wrong with ourselves and what's
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  Speaker 2: wrong with our bodies. We don't need somebody else to
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  Speaker 2: diagnose us and tell us, you know, even though being
• 11:52
  Speaker 2: a doctor is amazing and I, and I do want to,
• 11:56
  Speaker 2: I do want to pursue that career and being somebody
• 11:59
  Speaker 2: who can let people know what they can, yeah, how
• 12:03
  Speaker 2: to guide people, basically let people know. And then if
• 12:06
  Speaker 2: somebody got, you know, saying some, some surgical things that
• 12:10
  Speaker 2: they need, I will be the one to do that.
• 12:13
  Speaker 2: You know what I'm saying? But not, like, just working
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  Speaker 2: on everybody. So, yeah, you know, I would say definitely
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  Speaker 2: when I was in high school, because when I was
• 12:24
  Speaker 2: in high school, I wasn't working out. I wasn't eating
• 12:28
  Speaker 2: as bad, but I still wasn't watching my diet. I wasn't,
• 12:34
  Speaker 2: I was, you know what I'm saying, listening to terrible music.
• 12:38
  Speaker 2: I was.
• 12:40
  Speaker 2: I was just saying the wrong words. Like even, even,
• 12:44
  Speaker 2: even as little, like even when I think of it,
• 12:46
  Speaker 2: even as little as your words can, can play a
• 12:48
  Speaker 2: big factor in how your life and how, how everything,
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  Speaker 2: you know, pans out and what you listen to and
• 12:54
  Speaker 2: what you put in your body and what you, what you,
• 12:57
  Speaker 2: even what you touch, you know what I'm saying? It is,
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  Speaker 2: it's literally, it's literally biology, you know, biologically, um, like
• 13:06
  Speaker 2: that made that way, you know what I'm saying? When
• 13:08
  Speaker 2: you touch something, it goes into your skin and, And
• 13:10
  Speaker 2: then that, you know, that type of stuff. So, you know,
• 13:14
  Speaker 2: I watched that. I watched that. Oh. Here's Vani. Hi, guys. Hi. Welcome.
• 13:21
  Speaker 1: Oh.
• 13:22
  Speaker 2: So, oh.
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  Speaker 1: Yeah, that's a really interesting, lots of really interesting points
• 13:29
  Speaker 1: in there. Some really, really interesting points. And a, yeah,
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  Speaker 1: a heck of a story. A heck of a start
• 13:35
  Speaker 1: as well, being sort of airlifted from one hospital to
• 13:40
  Speaker 1: to the other. And I'll just bring you in, Bonnie,
• 13:43
  Speaker 1: in that sort of point there. What were your sort
• 13:47
  Speaker 1: of thoughts and feelings sort of going in the helicopter?
• 13:52
  Speaker 2: You can tell a story about the nurse. You can
• 13:55
  Speaker 2: tell a story about the nurse. I was... Actually, my
• 13:59
  Speaker 2: mama had me when she was 17. Yeah, I was 17. So,
• 14:01
  Speaker 2: I was confused, I guess.
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  Speaker 1: Um....
• 14:10
  Speaker 2: I just, I mean, I don't know.
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  Speaker 3: Cause see, I have been going back and forth to
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  Speaker 3: the doctor because in Norman, Oklahoma, I had a nurse practitioner.
• 14:20
  Speaker 3: So I didn't have, when, when he was born, I
• 14:24
  Speaker 3: had a nurse practitioner and it was funny cause I mean,
• 14:29
  Speaker 3: he was the best baby ever. Like he had no cry. He,
• 14:34
  Speaker 3: you would have never known that something was like really
• 14:36
  Speaker 3: wrong with him, you know?
• 14:38
  Speaker 2: What's that stuff in the back? Get off. Oh, my God.
• 14:41
  Speaker 2: Where you got to get that stuff? Why would you
• 14:43
  Speaker 2: pretty like... This is... I'm in my room, but no,
• 14:49
  Speaker 2: they can't see. They see Tom's. They do see everything,
• 14:53
  Speaker 2: but they see Tom's is big.
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  Speaker 3: Okay.
• 14:55
  Speaker 4: All right.
• 14:57
  Speaker 2: That's better. That's better. Okay, go ahead.
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  Speaker 3: I was 17, and... We were going to the nurse
• 15:08
  Speaker 3: practitioner and his stomach was still distended. But see, what
• 15:13
  Speaker 3: happened was in the hospital, he never passed the bowel.
• 15:15
  Speaker 3: He never passed the bowel movement. That tar stuff never
• 15:19
  Speaker 3: came out. But I was an overprotective mom. So I
• 15:23
  Speaker 3: had him with me all the time. He never went
• 15:25
  Speaker 3: to the nursery. So they never really got a chance
• 15:27
  Speaker 3: to see if he pooped. So when they asked me,
• 15:29
  Speaker 3: did he poop?
• 15:30
  Speaker 2: I was like, yeah, he pooped.
• 15:31
  Speaker 3: But it was just a little bit because he because
• 15:35
  Speaker 3: of he had Hirschsprung's.
• 15:37
  Speaker 2: And rectal stenosis. So he had a... So... Which a stenosis.
• 15:43
  Speaker 3: Is like an hourglass in his rectum. So not only
• 15:46
  Speaker 3: did he not have the muscles, he had a stenosis.
• 15:50
  Speaker 3: So nothing could pass through but liquids. So when he pooped,
• 15:55
  Speaker 3: the brown stuff in his diaper, I thought that that
• 15:58
  Speaker 3: was that.
• 16:00
  Speaker 2: But he needed a full diaper. I didn't know nothing
• 16:02
  Speaker 2: about that. So.
• 16:05
  Speaker 3: Actually, because he was breastfed, that's why the milk was
• 16:08
  Speaker 3: so soft, and it kept passing through the heavy stuff
• 16:12
  Speaker 3: and giving him a relief. They said if he was
• 16:15
  Speaker 3: on Similac, he might not have made it. So we
• 16:20
  Speaker 3: took him to the nurse practitioner, and she said that.
• 16:26
  Speaker 2: She didn't know what was.
• 16:26
  Speaker 3: He was like, he had a grin, his face had
• 16:29
  Speaker 3: turned red, and then it'd just be like literally like
• 16:33
  Speaker 3: just a stripe of boo-boo.
• 16:35
  Speaker 2: In a diaper.
• 16:37
  Speaker 3: And my mom, my.
• 16:39
  Speaker 2: Stepmother, they kept like, he's not really pooping.
• 16:42
  Speaker 3: Something's not going on.
• 16:43
  Speaker 2: And I'm like, he is pooping, but I'm 17. I
• 16:46
  Speaker 2: don't know no better. The little triple doo-doo, I thought
• 16:49
  Speaker 2: that was a diaper. I thought that was that.
• 16:52
  Speaker 3: I thought that was my first kid.
• 16:53
  Speaker 2: I didn't have no clue.
• 16:54
  Speaker 3: So we ended up taking him to the doctor.
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  Speaker 2: He did it in front of the nurse practitioner.
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  Speaker 3: And the nurse practitioner, my mom was like, what is that?
• 17:03
  Speaker 2: What is that? Why is he doing that? The nurse
• 17:05
  Speaker 2: practitioner basically said because he was angry. And my mom
• 17:09
  Speaker 2: was like, angry? Like, what do you mean?
• 17:13
  Speaker 3: And he was like, well, you know, he's four months.
• 17:17
  Speaker 2: He was like four months.
• 17:19
  Speaker 3: And, you know, being in a world where things are different,
• 17:23
  Speaker 3: we're just sitting here looking at this lady. And my
• 17:25
  Speaker 3: mom was like, is that racist? Because, like, what do
• 17:30
  Speaker 3: you mean? So my mom got mad.
• 17:32
  Speaker 2: Put the diaper on. Let's go. Get up out of here.
• 17:34
  Speaker 2: So she was mad. So we left.
• 17:36
  Speaker 3: And then Davion started like looking sick. So I took
• 17:44
  Speaker 3: him to the hospital. I called the ambulance and took
• 17:46
  Speaker 3: him to the hospital. And they were like, give him
• 17:51
  Speaker 3: a suppository because he couldn't take it. He was throwing
• 17:54
  Speaker 3: up because what happened and the throw up smelled like
• 17:57
  Speaker 3: like stool.
• 17:59
  Speaker 2: So I'm like, something ain't right. So I took him to,
• 18:02
  Speaker 2: I called the ambulance, went to the doctor.
• 18:04
  Speaker 3: They told me to stick a suppository up his, up
• 18:07
  Speaker 3: his behind.
• 18:08
  Speaker 2: Right?
• 18:09
  Speaker 3: So I'm sticking a suppository up his behind, but he's like,
• 18:12
  Speaker 3: every time I'm like trying to put it in, he's like,
• 18:16
  Speaker 3: he's screaming and hollering.
• 18:17
  Speaker 2: So I'm like, something ain't right.
• 18:19
  Speaker 3: So I called the ambulance again because my mom worked.
• 18:21
  Speaker 2: I'm 17. I'm calling.
• 18:22
  Speaker 3: So we go back to the hospital and they're like, well,
• 18:26
  Speaker 3: hold it in there. You know, like hold it and
• 18:29
  Speaker 3: let it melt. so it can get into his system
• 18:32
  Speaker 3: because he's steady throwing up. If he needs this medicine
• 18:36
  Speaker 3: to be able to keep anything down is what they're saying.
• 18:39
  Speaker 2: So I'm holding it. But as I'm holding it, he's.
• 18:42
  Speaker 3: Like, like he's going crazy.
• 18:45
  Speaker 2: So I'm like, something isn't right. So I called 911,
• 18:49
  Speaker 2: called 911 again.
• 18:49
  Speaker 3: And I called them so much that I knew my name.
• 18:52
  Speaker 3: They didn't come this time.
• 18:54
  Speaker 2: So I walked. I walked from my house. It was
• 18:57
  Speaker 2: maybe like two miles, Norman, Oklahoma. You know how hot
• 19:00
  Speaker 2: that is?
• 19:01
  Speaker 3: I walked from my house to.
• 19:05
  Speaker 2: St. Mary's?
• 19:06
  Speaker 4: No.
• 19:09
  Speaker 2: Norman Regional, I believe. I think it was Norman Regional
• 19:11
  Speaker 2: where I had you at. I walked to Norman Regional.
• 19:15
  Speaker 3: And the doctor was like, did anybody do a CAT
• 19:21
  Speaker 3: scan on him?
• 19:22
  Speaker 2: And I'm like, no.
• 19:25
  Speaker 3: So she took him and she did an x-ray or
• 19:27
  Speaker 3: CAT scan or something and Sure enough, Survival Life came,
• 19:35
  Speaker 3: and before I know it, it was the MLM Survival Life.
• 19:44
  Speaker 3: So we was dodging in and out of traffic, on
• 19:47
  Speaker 3: the side of the traffic. We was like speeding to
• 19:50
  Speaker 3: get to a children's hospital in oklahoma oh i thought
• 19:53
  Speaker 3: it was the helicopter oh no we didn't do a
• 19:55
  Speaker 3: helicopter oh it was no it was the emblems from
• 19:59
  Speaker 3: from norman regional to oklahoma city children's hospital oklahoma city
• 20:04
  Speaker 3: and he had to have immediate surgery he had to
• 20:06
  Speaker 3: have surgery right away um.
• 20:09
  Speaker 2: He had a a.
• 20:13
  Speaker 3: Stool that was as big as a grapefruit in his
• 20:17
  Speaker 3: bowel he was four months old and the doctor came
• 20:22
  Speaker 3: in and told me like and my mom my mom
• 20:24
  Speaker 3: was there too by that time she had left work
• 20:26
  Speaker 3: she flew there um And she was in, the doctor
• 20:30
  Speaker 3: told me and my mom, like, I don't know. I
• 20:33
  Speaker 3: don't believe in a higher power or anything. She's like,
• 20:35
  Speaker 3: but something saved your son. She's like, let me show you, like,
• 20:38
  Speaker 3: these x-rays. And she was like, his stomach wall or
• 20:43
  Speaker 3: his intestines was almost touching his stomach. It was as
• 20:47
  Speaker 3: thin as confetti paper. So she didn't understand how it
• 20:53
  Speaker 3: didn't pop. She didn't understand how his intestines didn't pop.
• 20:58
  Speaker 3: So he had five surgeries in one week. And then
• 21:07
  Speaker 3: they had to teach me how to do colostomies and
• 21:09
  Speaker 3: a mucous fistula. He had a colostomy and a mucous fistula,
• 21:12
  Speaker 3: so he taught me how to do it in the hospital.
• 21:15
  Speaker 3: And then I was still in high school, so I
• 21:20
  Speaker 3: had to find a place that could take him. But
• 21:22
  Speaker 3: every daycare that I took him to, Every time I
• 21:24
  Speaker 3: picked him up, he had a mucus fissure and a
• 21:26
  Speaker 3: colostomy in the middle. It would have been lifted and
• 21:33
  Speaker 3: it had been leaking on his shirt because it was
• 21:36
  Speaker 3: too many kids for them to release the air out
• 21:39
  Speaker 3: of his colostomy. So when it blows up, you got
• 21:43
  Speaker 3: to release the air or the seal breaks and then
• 21:46
  Speaker 3: it's poop everywhere. It's just like a colostomy. If you poop,
• 21:50
  Speaker 3: it's that air.
• 21:51
  Speaker 2: You got to let it out. You got to release
• 21:52
  Speaker 2: the air.
• 21:54
  Speaker 3: They didn't ever release the air, so his back was
• 21:56
  Speaker 3: always busted. So I ended up dropping out of school
• 21:59
  Speaker 3: and taking care of my son. And then I come
• 22:01
  Speaker 3: to find out that Milwaukee, Wisconsin has the best GI
• 22:06
  Speaker 3: clinic in the world.
• 22:09
  Speaker 2: Right. Well, yeah. In the world. Is the world? Maybe
• 22:13
  Speaker 2: in the United States. In the United States. Is it
• 22:15
  Speaker 2: the United States? It might be. Good.
• 22:18
  Speaker 3: Anything.
• 22:21
  Speaker 2: Very amazing.
• 22:22
  Speaker 3: So I was like, oh my God, I'm going home.
• 22:25
  Speaker 3: Cause I, you know, and my mom was, so I
• 22:28
  Speaker 3: moved with my aunt in Milwaukee, Wisconsin.
• 22:31
  Speaker 2: And then there that goes. And that's the story of
• 22:35
  Speaker 2: his death. That's the story. And then like, basically, um,
• 22:39
  Speaker 2: after we moved back to Milwaukee, we, um, had left
• 22:45
  Speaker 2: and went to Texas. And it was really like, I,
• 22:49
  Speaker 2: And that was the time where I had my diapers.
• 22:52
  Speaker 1: Oh, yeah.
• 22:53
  Speaker 2: The time I had my diapers. And I had the same,
• 22:55
  Speaker 2: basically the same thing. And the same, just like, you know,
• 23:02
  Speaker 2: using the bathroom. I was using the bathroom on myself
• 23:04
  Speaker 2: because I really couldn't feel it. You know what I'm saying?
• 23:08
  Speaker 2: He still had no feeling. Had no feeling.
• 23:09
  Speaker 3: Because his stomach was so distended and his intestines were
• 23:12
  Speaker 3: so stretched out.
• 23:14
  Speaker 2: It had messed up the nerves completely. Completely.
• 23:18
  Speaker 3: So it damaged his nerve and then completely. So they
• 23:23
  Speaker 3: were like, that comes with time. Hopefully that the nerves
• 23:28
  Speaker 3: will come back and, you know, he'll be building his Kegel,
• 23:32
  Speaker 3: you know, and be able to push and, you know,
• 23:36
  Speaker 3: you get hurting. Kind of hold it in because it
• 23:39
  Speaker 3: was just releasing. So what we would do is.
• 23:44
  Speaker 2: We would have.
• 23:48
  Speaker 2: Toilet time.
• 23:49
  Speaker 3: I would give him some Miralax. And we would sit
• 23:52
  Speaker 3: on the toilet in the morning. Then he'd come home
• 23:54
  Speaker 3: from school.
• 23:55
  Speaker 2: And then we'd do it at night. And then I
• 23:57
  Speaker 2: would just, like, come on. One, two, three, push. Push
• 24:02
  Speaker 2: as hard as I could. As hard as he could.
• 24:03
  Speaker 2: And sometimes it didn't come out. Sometimes it did, but
• 24:07
  Speaker 2: sometimes it didn't. Sometimes it did.
• 24:09
  Speaker 3: We just wanted to get some type of release so
• 24:12
  Speaker 3: that it wouldn't be him in school, you know.
• 24:16
  Speaker 2: Yeah.
• 24:16
  Speaker 3: But it was a hard time. But he was such
• 24:19
  Speaker 3: a good guy. Like, you never even would have known
• 24:22
  Speaker 3: nothing that was wrong with him. He played basketball.
• 24:25
  Speaker 2: He was a straight head. I did orchestras and orchestras.
• 24:32
  Speaker 1: Yeah.
• 24:32
  Speaker 3: Got a full scholarship to be a doctor, GI doctor. So, yeah.
• 24:38
  Speaker 2: Yeah. So, really, when I became... like 18 and I
• 24:44
  Speaker 2: started going to college. Do y'all need anything else from me?
• 24:50
  Speaker 2: You're good for right now. I'm going to ask you,
• 24:53
  Speaker 2: if I got any questions, I'm going to ask you
• 24:55
  Speaker 2: some questions. I'm going to still ask you some questions
• 24:58
  Speaker 2: if you got any questions, but for right now, that's all.
• 25:01
  Speaker 2: That's fine.
• 25:03
  Speaker 1: Thank you so much, buddy.
• 25:04
  Speaker 2: That was brilliant. You're welcome. So, when I.
• 25:12
  Speaker 2: When I got to college. And I started. Just. I
• 25:18
  Speaker 2: just got tired of me being. Well really for real.
• 25:22
  Speaker 2: I got tired of being skinny. Honestly I got tired.
• 25:24
  Speaker 2: It wasn't even about. Because when I became 16. I
• 25:29
  Speaker 2: had got. A siostomy. So they had. I had a surgery.
• 25:37
  Speaker 2: My last surgery was when I was 16. I had
• 25:39
  Speaker 2: a siostomy. So basically what they did was. They cut out,
• 25:44
  Speaker 2: didn't they cut out another piece of my colon? Just
• 25:46
  Speaker 2: a small, small piece. The doctors, when I was 16,
• 25:49
  Speaker 2: not got the siasame?
• 25:50
  Speaker 5: No, no.
• 25:51
  Speaker 2: Oh, no? They just cut, they just reopened the incision.
• 25:56
  Speaker 2: Only they didn't.
• 25:57
  Speaker 3: They just poked the hole, pulled a piece, the little
• 26:02
  Speaker 3: piece right there, put that thing in there.
• 26:03
  Speaker 2: Okay. So yeah, basically, so what this is, is it
• 26:08
  Speaker 2: has a little button on it. And what it does
• 26:12
  Speaker 2: is saline solution comes in and out of it it
• 26:16
  Speaker 2: goes in and come out well yeah i'm saying it
• 26:19
  Speaker 2: doesn't come it doesn't come out it doesn't come out
• 26:22
  Speaker 2: it just goes in but all it does is soften
• 26:25
  Speaker 2: my stool so then you close it so you put
• 26:30
  Speaker 2: like maybe uh 20 um a milliliter of it or
• 26:34
  Speaker 2: 25 milliliters but i used to do it i used
• 26:36
  Speaker 2: to do it daily um but when i started so
• 26:41
  Speaker 2: it was your this it was a crazy thing. I
• 26:44
  Speaker 2: started working out because I wanted to be, I didn't
• 26:47
  Speaker 2: want to be skinny anymore. I wanted to be, look
• 26:50
  Speaker 2: stronger and be stronger. But with that, I started like
• 26:55
  Speaker 2: doing core exercises and, you know, core and chest exercises and,
• 27:01
  Speaker 2: and hamstring exercises and back extension exercises. And my cuticle
• 27:09
  Speaker 2: muscles were, they literally came back. They literally, like, you know, grew, like,
• 27:16
  Speaker 2: I don't know, grew or, like, I don't know what
• 27:19
  Speaker 2: it's called, but I feel the nerves now in my
• 27:22
  Speaker 2: kegels and in my stomach. Like, I could feel if
• 27:27
  Speaker 2: there's anything that's hitting my stomach, I could feel, you
• 27:31
  Speaker 2: know what I'm saying, if there's any... just like any
• 27:37
  Speaker 2: stool that I need to, like if I need to
• 27:39
  Speaker 2: use the bathroom or anything, like I could literally feel
• 27:41
  Speaker 2: and not go to the bathroom. So when I was like,
• 27:45
  Speaker 2: when I was working out and I was building muscle,
• 27:48
  Speaker 2: I was starting to use the bathroom. I was like, whoa,
• 27:50
  Speaker 2: I'm building muscle. And now I can actually like use
• 27:53
  Speaker 2: the bathroom. So it was like mind blowing to me.
• 27:56
  Speaker 2: And so I was like, you know what, what else
• 27:59
  Speaker 2: can I do to help my body? So, you know,
• 28:01
  Speaker 2: then I started, then when I got into my sophomore
• 28:04
  Speaker 2: year of college, I signed up for a yoga class.
• 28:09
  Speaker 2: It was like, I signed up for a little yoga
• 28:11
  Speaker 2: class because I thought, I was like, you know, it's
• 28:13
  Speaker 2: just a, it's a credit and, you know what I'm saying?
• 28:17
  Speaker 2: But I think, well, no, that was for Pilates though.
• 28:20
  Speaker 2: That was for Pilates. I did Pilates too. I did Pilates. But,
• 28:25
  Speaker 2: the yoga, I was like, you know, yeah, but it
• 28:27
  Speaker 2: was for the girls too. But the Pilates was for
• 28:29
  Speaker 2: the girls. But, when I joined the yoga class, I
• 28:34
  Speaker 2: felt like a new person. Like, when you're doing all
• 28:37
  Speaker 2: those yoga stretches and you're, you know, stretching out just everything.
• 28:42
  Speaker 2: And you're just, you're making sure that because with yoga,
• 28:46
  Speaker 2: you have to be one with yourself to be still.
• 28:50
  Speaker 2: Because if you're not still, or even not, even if you're,
• 28:54
  Speaker 2: if you're not one with yourself, you're going to keep
• 28:55
  Speaker 2: jittering around. You're going to move your, your mind's going
• 28:58
  Speaker 2: to go somewhere else. You know what I'm saying? So
• 29:01
  Speaker 2: I just like doing yoga. It taught me how to,
• 29:06
  Speaker 2: be more disciplined with myself and give myself time. You
• 29:10
  Speaker 2: know what I'm saying? Give myself time to... Because, like,
• 29:14
  Speaker 2: with this... Like, when I was in high school, I
• 29:16
  Speaker 2: was like, you know what I'm saying? Why is this
• 29:18
  Speaker 2: happening to me? Like, when is this going to be over?
• 29:21
  Speaker 2: You know what I'm saying? But I realized that I
• 29:25
  Speaker 2: was at my destination at that time. I realized that
• 29:30
  Speaker 2: the journey was the destination. My journey, you know... he talked, no,
• 29:37
  Speaker 2: he said, my, he's saying that he doesn't even talk.
• 29:41
  Speaker 2: The good thing about this is that Tom doesn't even talk. Yeah.
• 29:45
  Speaker 2: It's the easiest job in the world. And that's amazing.
• 29:50
  Speaker 2: So yeah, but do you have any questions for me? Oh, plenty.
• 29:54
  Speaker 1: I'm really interested just to touch on exercise as well. Um,
• 30:00
  Speaker 1: because it's, it's something that, that I worked in for, uh, well,
• 30:07
  Speaker 1: just over a decade, um, working in professional sport. And
• 30:11
  Speaker 1: I think one of the things, again, would not, but
• 30:17
  Speaker 1: certainly me, I'm not, um, a doctor obviously can't say
• 30:21
  Speaker 1: do this, do that, but it's really interesting when people
• 30:25
  Speaker 1: talk about exercise and the Obviously, we know exercise is
• 30:29
  Speaker 1: good for you. We know it makes you feel better.
• 30:31
  Speaker 1: All of that stuff. It doesn't take a genius to
• 30:33
  Speaker 1: work that out. But it's interesting the effect it sometimes
• 30:37
  Speaker 1: has on those with Hirschsprungs. See, because we do lack...
• 30:44
  Speaker 1: Everybody with Hirschsprungs lacks some parts of their stomach, whether
• 30:48
  Speaker 1: you've got long segment, short segment, whatever. So having... the
• 30:53
  Speaker 1: strongest stomach muscles. It's really interesting you talk about yoga
• 30:56
  Speaker 1: as well. Really, really interesting how that's benefited you. But
• 31:01
  Speaker 1: in terms of sport yourself, obviously you said you played
• 31:07
  Speaker 1: all manner of things growing up.
• 31:08
  Speaker 2: Yeah, I played tennis. Yeah.
• 31:12
  Speaker 1: What else do you do now, sports-wise, that you think
• 31:19
  Speaker 1: benefits you?
• 31:22
  Speaker 2: Well, I think Now, sports-wise, I usually do, like, at
• 31:27
  Speaker 2: my school, we have intramural. So intramural is basically, like,
• 31:32
  Speaker 2: anybody can join. It's like a tournament type of thing,
• 31:36
  Speaker 2: and you win money, and, you know, you win bragging
• 31:40
  Speaker 2: rights as well. There's intramural everything. There's intramural basketball, intramural tennis,
• 31:44
  Speaker 2: intramural football. There's intramural soccer, stuff of that nature.
• 31:47
  Speaker 3: So.
• 31:50
  Speaker 2: I basically do that. And then I, I work out
• 31:55
  Speaker 2: four times, four times a week. So four times out
• 32:00
  Speaker 2: of the week, I try or five times out of
• 32:01
  Speaker 2: the week, I try to get myself like at least
• 32:03
  Speaker 2: two days to rest because rest days are very important.
• 32:07
  Speaker 2: I put, I put the right food in my body,
• 32:11
  Speaker 2: like the right food that like, I like, like me
• 32:13
  Speaker 2: and my mom, we actually have a garden outside. We
• 32:17
  Speaker 2: have a garden outside. We got watermelon outside. We got
• 32:23
  Speaker 2: green pepper. We got cantaloupe. We got jalapeno. We got... Okay,
• 32:31
  Speaker 2: I'm back. Bye, guys. Bye. Thank you.
• 32:35
  Speaker 1: So, yeah, we got.
• 32:45
  Speaker 2: Green pepper we got jalapeno we got uh we got
• 32:49
  Speaker 2: kale we got lettuce we got uh parsley we got
• 32:56
  Speaker 2: uh chives we got this whole plethora we got many
• 33:00
  Speaker 2: more stuff after that too but um you know i
• 33:04
  Speaker 2: i incorporate that into my diet and i try not
• 33:06
  Speaker 2: to eat a lot of processed food Like, even, I'm
• 33:10
  Speaker 2: going to be honest with you. Even the grocery store,
• 33:15
  Speaker 2: I mean, the grocery store food probably is better over
• 33:17
  Speaker 2: there where you at. But in America, where I am,
• 33:20
  Speaker 2: it's terrible. It's absolutely terrible. You know, so you have to,
• 33:26
  Speaker 2: you know, and I would say, you know, some people
• 33:29
  Speaker 2: will say it's difficult. Some people will say it's difficult.
• 33:31
  Speaker 2: But I don't think having a garden is difficult. You
• 33:34
  Speaker 2: know what I'm saying? I think it's mind over matter.
• 33:36
  Speaker 2: whatever and I'm just I think I'm cut from a
• 33:40
  Speaker 2: different cloth because there's a lot of people that have
• 33:45
  Speaker 2: limit like a lot of limited beliefs about how the
• 33:47
  Speaker 2: world works and how everything is and me I'm just
• 33:52
  Speaker 2: it was so crazy because I've gone through so much
• 33:54
  Speaker 2: and I'm just so optimistic about life and it's just
• 33:58
  Speaker 2: like I feel like and then I be like you
• 34:01
  Speaker 2: know I tell people and they be like oh what
• 34:03
  Speaker 2: do you know you know what I'm saying or Oh,
• 34:05
  Speaker 2: you know what I'm saying? How do you know? You young.
• 34:07
  Speaker 2: But it's just like, bro, I've been through hell. You
• 34:12
  Speaker 2: know what I'm saying? I came out, you know what
• 34:15
  Speaker 2: I'm saying? Looking at heaven. You know what I'm saying?
• 34:17
  Speaker 2: So at the end of the day, you really just
• 34:20
  Speaker 2: mind over matter. You know what I'm saying? It's really
• 34:23
  Speaker 2: what you believe. If you believe in yourself, you believe
• 34:25
  Speaker 2: that you can strive for something better. And you can
• 34:28
  Speaker 2: strive to be something better. Look at all these millionaires
• 34:33
  Speaker 2: and billionaires and people who have done amazing things. They
• 34:37
  Speaker 2: put their mind over what other people said, over what
• 34:41
  Speaker 2: other people thought, over what, you know what I'm saying?
• 34:43
  Speaker 2: And it brought them to a better outcome. And even
• 34:47
  Speaker 2: if it didn't bring them to a better outcome, they
• 34:49
  Speaker 2: have a better mindset. You know what I'm saying? Stuff
• 34:53
  Speaker 2: don't get to them as much, you know? Definitely.
• 34:57
  Speaker 5: Oh yeah that thing oh yeah go ahead go on
• 35:00
  Speaker 5: sorry yeah i was just gonna say i think we're
• 35:02
  Speaker 5: on some similar wavelengths here because that's why i wanted
• 35:06
  Speaker 5: to interview people like yourself you know someone who.
• 35:09
  Speaker 1: Achieves a lot despite again going through manner of things
• 35:14
  Speaker 1: you've been.
• 35:15
  Speaker 4: Through which is just incredible And I thank you so
• 35:19
  Speaker 4: much because I can tell that you're such an optimistic
• 35:23
  Speaker 4: person and you probably go above and beyond for anybody
• 35:27
  Speaker 4: and for yourself.
• 35:29
  Speaker 2: You probably go above and beyond for anybody and yourself.
• 35:31
  Speaker 2: You know what I'm saying? So I really applaud you
• 35:34
  Speaker 2: about that. And I want to tell any kid that's
• 35:37
  Speaker 2: watching or any grown up that's watching that, you know, Mike, um,
• 35:42
  Speaker 2: feel like, uh, you know, maybe, I don't know if
• 35:44
  Speaker 2: you believe, if they believe in God or feel like
• 35:46
  Speaker 2: God has abandoned you just because you've had this or,
• 35:49
  Speaker 2: or feel like, you know, life, life don't want you
• 35:52
  Speaker 2: to succeed. Um, I don't want you to tell you that,
• 35:55
  Speaker 2: you know what I'm saying? Look at the, look, the
• 35:56
  Speaker 2: grass is greener on the other side. Just think about that.
• 35:59
  Speaker 2: You know what I'm saying? And also think about, you know,
• 36:02
  Speaker 2: changing your mindset. You know what I'm saying? Think about
• 36:05
  Speaker 2: saying positive stuff to yourself every day, because I, if
• 36:08
  Speaker 2: you say positive stuff or not even positive stuff, just
• 36:10
  Speaker 2: stuff that brings you, that uplifts you, because I, I'm very, very,
• 36:15
  Speaker 2: I'm very, very in tune with spirituality and spiritual nature that,
• 36:20
  Speaker 2: you know, all, you know, all this, all this is
• 36:22
  Speaker 2: just like you said, is wavelengths. All it is is wavelengths.
• 36:26
  Speaker 2: You go on a higher wavelength or you go on
• 36:28
  Speaker 2: a lower wavelength. And sometimes the lower wavelength ain't even
• 36:32
  Speaker 2: like a low, like low, low, like, um, you know,
• 36:36
  Speaker 2: lust and pride are on two different wavelengths, but they're
• 36:38
  Speaker 2: both low. You know what I'm saying? So it's like,
• 36:42
  Speaker 2: at the end of the day, you know what I'm saying?
• 36:46
  Speaker 2: You look at your circumstance, you be like, damn, I
• 36:49
  Speaker 2: know my circumstance look bad, or damn, you know what
• 36:51
  Speaker 2: I'm saying? I got this condition going on, or I
• 36:54
  Speaker 2: don't got no money in the bank. But then you
• 36:56
  Speaker 2: be like, how can I make my circumstances better? That's
• 37:00
  Speaker 2: what people don't see. People be like, oh, my circumstance
• 37:03
  Speaker 2: is bad, and then They go their whole life thinking
• 37:05
  Speaker 2: that it's the circumstance, but it really is you. It's you.
• 37:11
  Speaker 2: You know what I'm saying? Because I don't know. I'm
• 37:14
  Speaker 2: going to be honest. I could have killed myself in
• 37:16
  Speaker 2: high school. You know what I'm saying? I really could
• 37:18
  Speaker 2: have killed myself in high school because there's some people
• 37:25
  Speaker 2: that eventually found out and made fun of me. But
• 37:28
  Speaker 2: at the end of the day, I still knew who
• 37:31
  Speaker 2: I was. I knew who I was as a person.
• 37:34
  Speaker 2: I knew who I was going to be. I knew
• 37:36
  Speaker 2: that this, you know, this part of me that they
• 37:38
  Speaker 2: see now is not going to be who they will
• 37:42
  Speaker 2: be seeing. You feel me? I will be a whole
• 37:45
  Speaker 2: totally different person. You know what I'm saying? With a
• 37:47
  Speaker 2: whole totally different mindset about even them. You know what
• 37:50
  Speaker 2: I'm saying? I don't even think of them as, you
• 37:53
  Speaker 2: know what I'm saying, bullies or whatever. You know, they
• 37:55
  Speaker 2: were just being them. They didn't know what was going on.
• 37:58
  Speaker 2: They smelled something that was not good and they said something. So,
• 38:01
  Speaker 2: at the end of the day, You know, I can't
• 38:03
  Speaker 2: get mad at them. You know what I'm saying? I can't...
• 38:06
  Speaker 2: You know, people get mad at the world. So, you
• 38:09
  Speaker 2: know what I'm saying? But you can't get them mad
• 38:11
  Speaker 2: at the world. The world reflects... What I've learned is
• 38:13
  Speaker 2: the world reflects you. The world reflects you. However you
• 38:19
  Speaker 2: think of yourself, the world will think of you in
• 38:21
  Speaker 2: that manner. You know? So.
• 38:24
  Speaker 1: Makes sense. Yeah, definitely. But it's interesting. I mean, you know,
• 38:29
  Speaker 1: and obviously... bad that obviously you went through a lot
• 38:33
  Speaker 1: of really horrible stuff when it comes to schooling. And
• 38:37
  Speaker 1: I know that I have chats with parents who say,
• 38:40
  Speaker 1: you know, I'm concerned about my child going to school
• 38:44
  Speaker 1: and potentially facing bullying or this, that, the other. Which
• 38:50
  Speaker 1: is totally understandable. Not that it should happen, but it's
• 38:56
  Speaker 1: understandable to have those concerns.
• 38:58
  Speaker 2: It does definitely happen. Was there sort of.
• 39:01
  Speaker 1: Anything in the end that you sort of, because you're
• 39:05
  Speaker 1: obviously very, very positive about your situation now. Was there
• 39:09
  Speaker 1: anything that really sort of changed during schooling that helped
• 39:14
  Speaker 1: with that? Or was that sort of later on?
• 39:18
  Speaker 2: I feel like in schooling, and I'm going to be
• 39:20
  Speaker 2: honest with you too, even though some of the teachers
• 39:22
  Speaker 2: didn't understand, I had a lot of teachers who gave
• 39:24
  Speaker 2: me support. I had a lot of teachers who gave
• 39:28
  Speaker 2: me support. And, I had a lot of teachers who
• 39:32
  Speaker 2: really wanted me to succeed. You know, the lady that
• 39:35
  Speaker 2: gave me my scholarship, she knew what was going on
• 39:37
  Speaker 2: with me. And she took a chance on me. And
• 39:41
  Speaker 2: she's seen my academics and she's seen what I was
• 39:43
  Speaker 2: going through. She's seen that. Because when I was in
• 39:46
  Speaker 2: high school, I remember I told you I got this.
• 39:49
  Speaker 2: So I was I was, I got this. So I
• 39:51
  Speaker 2: was in the hospital for like a month and a half.
• 39:55
  Speaker 2: And then I got the surgery. So I couldn't, I
• 39:58
  Speaker 2: was on a cane. I was on a, not a cane,
• 40:02
  Speaker 2: but a walker. I was on a walker for about
• 40:06
  Speaker 2: a month and a half. So I was gone from
• 40:09
  Speaker 2: school for about three months. That's down there a semester.
• 40:11
  Speaker 2: You know what I'm saying? So it's like, even though
• 40:15
  Speaker 2: I took a semester off, you know, my grades dropped and,
• 40:18
  Speaker 2: My grades didn't drop that bad, but you know what
• 40:21
  Speaker 2: I'm saying? And I got some help. I got some
• 40:23
  Speaker 2: more help to kind of get the grades going back up.
• 40:26
  Speaker 2: But my scholarship provider, she really took a chance and
• 40:32
  Speaker 2: she really believed in me. And even my principal, shout
• 40:37
  Speaker 2: out to my principal, you know what I'm saying? I
• 40:40
  Speaker 2: went to his bathroom, his personal bathroom to change. And so,
• 40:45
  Speaker 2: you know what I'm saying? I really, you know what
• 40:47
  Speaker 2: I'm saying? Like, it was like, you know, like the little,
• 40:50
  Speaker 2: like in the cartoons, the little, the walls that looked
• 40:54
  Speaker 2: like they walls, but they bathed them. You know what
• 40:56
  Speaker 2: I'm saying? Like he had something like that. You know
• 40:58
  Speaker 2: what I'm saying? He had stuff like that. And then even,
• 41:01
  Speaker 2: you know, some of the classrooms had bathrooms. So, you know,
• 41:04
  Speaker 2: that the teachers had that, you know, they let me
• 41:06
  Speaker 2: go in there and change. So, yeah, I really give
• 41:09
  Speaker 2: it to the support of my teachers. And then the
• 41:11
  Speaker 2: support of my mom, like my mom, You know, she
• 41:14
  Speaker 2: could have damn near aborted me or something. You feel me? So,
• 41:17
  Speaker 2: at the end of the day, I understand her situation.
• 41:20
  Speaker 2: She was 17, she didn't know what to do. She
• 41:23
  Speaker 2: was in the state. She was in, you know, a
• 41:25
  Speaker 2: city where they didn't even know what was going on.
• 41:28
  Speaker 2: You know what I'm saying? So, you know, the lady
• 41:32
  Speaker 2: was talking about, you know, I was angry at the world.
• 41:36
  Speaker 2: And I was like, yeah. So, I mean, they.
• 41:40
  Speaker 1: Didn't know what was going on. I know she's gone
• 41:43
  Speaker 1: out somewhere, your mom, but, I mean, absolutely amazing. Incredible,
• 41:47
  Speaker 1: incredible job. Incredible job that she's done.
• 41:51
  Speaker 2: Yeah. And, man, I really want to see you, man.
• 41:55
  Speaker 2: I really want to see you and meet you and,
• 41:57
  Speaker 2: you know what I'm saying, let's really talk, you know
• 41:59
  Speaker 2: what I'm saying, from off of this. But still, you
• 42:02
  Speaker 2: know what I'm saying, we could do something or go
• 42:05
  Speaker 2: out somewhere and, you know what I'm saying. And it'll be,
• 42:08
  Speaker 2: it'll be really fun, man. Cause I love what you're
• 42:10
  Speaker 2: doing here. Like, this is amazing. And I'm going to
• 42:13
  Speaker 2: tell you, I, when I was, when I was in
• 42:16
  Speaker 2: high school, I really needed someone like me or someone
• 42:20
  Speaker 2: like you to tell, to tell someone like me when
• 42:23
  Speaker 2: I was back then that everything is going to be okay.
• 42:26
  Speaker 2: You know?
• 42:27
  Speaker 1: Yeah. We don't come across many other Hirschsprungs people, do we?
• 42:31
  Speaker 1: And I really appreciate that. Thank you so much. I mean, we're,
• 42:34
  Speaker 1: But again, like I said before, it doesn't work without
• 42:37
  Speaker 1: people like yourself and other people coming on. It doesn't work.
• 42:41
  Speaker 2: All those people, you know what I'm saying? They see
• 42:46
  Speaker 2: their selves in us. They see their selves in us.
• 42:51
  Speaker 2: Those moms that are dealing with that, see the moms
• 42:55
  Speaker 2: on this podcast, and they think of themselves. You're really
• 43:02
  Speaker 2: doing God's work here, for real. I don't know if
• 43:04
  Speaker 2: you believe in God, but you're doing God's work. Absolutely. Absolutely.
• 43:08
  Speaker 2: But no, thank you. This is very, very kind.
• 43:09
  Speaker 1: Very, very kind of her. But it's been....
• 43:13
  Speaker 2: Sorry, go on. Go ahead. Go ahead. There you go.
• 43:16
  Speaker 2: Go ahead.
• 43:17
  Speaker 1: No, it's been a heck of a story, yours thus far.
• 43:20
  Speaker 1: And I know that I came across you via, I think,
• 43:23
  Speaker 1: TikTok originally.
• 43:24
  Speaker 2: TikTok originally. And then I think I followed you on
• 43:30
  Speaker 2: Instagram too. But they see really good stuff.
• 43:34
  Speaker 1: For anybody who hasn't seen your TikTok work, you know,
• 43:38
  Speaker 1: if you want some really optimistic, uplifting, little short videos,
• 43:45
  Speaker 1: then please check out Davion's TikTok because it is really,
• 43:49
  Speaker 1: really good. And Instagram as well. I mean, you've got.
• 43:54
  Speaker 2: Thing is, well, I'm going to give them to you
• 43:56
  Speaker 2: so you can put them on. You know what I'm saying? I'm,
• 43:59
  Speaker 2: you know, So, yeah, man, I'm really happy that you
• 44:06
  Speaker 2: told me about this. I'm happy that we got to
• 44:08
  Speaker 2: collaborate with this. We're really giving people hope. We're giving
• 44:13
  Speaker 2: kids hope. When I tell you, I don't know. I
• 44:18
  Speaker 2: know you know that this can go somewhere, but when
• 44:20
  Speaker 2: I tell you this can really go somewhere, this can
• 44:23
  Speaker 2: go somewhere far. Like, for real, this could go somewhere far.
• 44:27
  Speaker 2: And I want to tell you, Tom, be ready for it.
• 44:31
  Speaker 2: because that's all you got to do it's a mindset
• 44:33
  Speaker 2: you got the mindset you got the mindset to be
• 44:36
  Speaker 2: that to be on them uh with you're gonna be
• 44:39
  Speaker 2: on them same what the joe rogan i'm telling.
• 44:41
  Speaker 5: You yeah we'll see enough believe.
• 44:47
  Speaker 1: We will have to wait and see we will have
• 44:48
  Speaker 1: to wait and see but this has been great to
• 44:52
  Speaker 1: have you on really has a really really good like Really,
• 44:56
  Speaker 1: really interesting story and so good to see that you're
• 45:00
  Speaker 1: doing so well now. What do you sort of hope
• 45:03
  Speaker 1: for in the future?
• 45:06
  Speaker 2: I hope that we just get more awareness on, you
• 45:12
  Speaker 2: know what I'm saying, what people are going through with
• 45:14
  Speaker 2: Hirschbrands just because Hirschbrands is so rare. I think there's only, what, 5,000
• 45:18
  Speaker 2: cases in the U.S.? I think there's only 5,000 cases
• 45:20
  Speaker 2: in the U.S. So just, and even on the, Because
• 45:27
  Speaker 2: I think I've seen something about it. It was like 500, oh, 5,000
• 45:31
  Speaker 2: cases in a year. My bad. 5,000 cases in a year. So,
• 45:37
  Speaker 2: you know, at the end of the day, I just
• 45:39
  Speaker 2: want more awareness on these type of situations. You know
• 45:42
  Speaker 2: what I'm saying? Because people, I feel like when people
• 45:45
  Speaker 2: don't get as much support and awareness, they feel like
• 45:48
  Speaker 2: it's hopeless. They feel like it's hopeless. They feel like
• 45:52
  Speaker 2: what can they do if nobody else knows, you know? Exactly. Exactly.
• 45:58
  Speaker 2: They don't know. Nobody else knows. Google doesn't know. You
• 46:01
  Speaker 2: know what I'm saying? Chat, chat GBT doesn't know. So how,
• 46:04
  Speaker 2: you know, how can I know? You know, but at
• 46:07
  Speaker 2: the end of the day, like with me, I just
• 46:10
  Speaker 2: say Google and chat GBT for, for me, they don't
• 46:14
  Speaker 2: have to know because just being, just being able to
• 46:20
  Speaker 2: self examine, you know what I'm saying? I, And that's
• 46:24
  Speaker 2: the real takeaway I want to give people. Just self-examine yourself.
• 46:27
  Speaker 2: You know, you go to the doctor. Of course, you
• 46:29
  Speaker 2: can definitely go to the doctor. And I'm not advising
• 46:31
  Speaker 2: you to not go to the doctor. I'm just saying,
• 46:35
  Speaker 2: at the end of the day, the doctor is a
• 46:37
  Speaker 2: human being just like you. Just like you. So, you
• 46:42
  Speaker 2: know your body more than a doctor because you're inside
• 46:44
  Speaker 2: your body. So, just look at the signs. You know
• 46:48
  Speaker 2: what I'm saying? Ask your doctor about the signs. And
• 46:51
  Speaker 2: then have your own, you know what I'm saying, your
• 46:53
  Speaker 2: own critical thinking about the science.
• 46:57
  Speaker 4: Yep.
• 46:57
  Speaker 2: Use your resources like ChatGPT and Google. And then also
• 47:02
  Speaker 2: look inside yourself. So, yeah. But I really thank you
• 47:06
  Speaker 2: for having me on here. And, you know what I'm saying? So,
• 47:12
  Speaker 2: thank you very much, man. Thank you very much.
• 47:15
  Speaker 1: Thanks so much for carrying on.
• 47:17
  Speaker 2: Of course.
• 47:19
  Speaker 1: Thank you. Take care.
• 47:21
  Speaker 2: Take care. Thank you.