Latest / Tom's Hirschsprung's Podcast / Episode 105 - 2nd Anniversary Special With Mark Schulz

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Episode 105 - 2nd Anniversary Special With Mark Schulz · Tom's Hirschsprung's Podcast

0:02
Speaker 1: You are listening to Tom's Hirshprung's Podcast, a space where
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Speaker 1: we talk openly about living with Hirshprung's 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 one hundred and five,
0:47
Speaker 1: the second anniversary episode of Tom's Hirshbrung's Podcast. I am
0:52
Speaker 1: delighted to be joined by Mark Schultz. Mark, Welcome to
0:56
Speaker 1: the podcast.
0:57
Speaker 2: He dam I am delayed to be here.
1:00
Speaker 1: Thank you so much for coming on now. Long time,
1:04
Speaker 1: I guess long the time listeners all, some people may
1:07
Speaker 1: have heard a little bit about you and your story
1:11
Speaker 1: via your wife Sarah's episode if they've listened to that
1:14
Speaker 1: episode ninety three, which she briefly touched on the fact
1:18
Speaker 1: that you have hirsbruns and there's a family history of hirshpruns.
1:22
Speaker 1: So we kind of kind of delve through that a
1:25
Speaker 1: little bit as well. We didn't we didn't talk We've
1:28
Speaker 1: talked mainly about your your son Remi and his hirshbrung
1:33
Speaker 1: story in Sarah's episode. In this episode, we could kind
1:35
Speaker 1: of go through your your still a little bit on
1:38
Speaker 1: your story, your family history, and and how you've been
1:42
Speaker 1: able to achieve so much as well, which is fantastic.
1:47
Speaker 1: But would you like to just sort of start with
1:48
Speaker 1: a little bit of sort of family history of hirshprungs
1:52
Speaker 1: because there's a fair a fair bit within your your bloodline.
1:57
Speaker 2: Yes, I was just thinking about it.
1:59
Speaker 3: So fourth generation confirmed, So I guess what is our
2:04
Speaker 3: family history? So we have there is a specific genetic
2:08
Speaker 3: mutation that has been passed down and through the power
2:12
Speaker 3: of genetics, we have confirmed that Remy has it, that
2:16
Speaker 3: I have it. That presumably my mom must have had
2:20
Speaker 3: it right as a carrier because.
2:22
Speaker 2: She did not have Hirshbrungs.
2:24
Speaker 3: But my mom is the oldest of five and her
2:28
Speaker 3: two youngest my aunt and uncle, both had hirshbruns and
2:32
Speaker 3: so they also did the genetic testing, so they're also
2:35
Speaker 3: carriers at this variant. So my grandmother, who is an
2:39
Speaker 3: only child, must have carried this gene And when we
2:43
Speaker 3: dug a little bit further down, when Remy was first born,
2:46
Speaker 3: we unearthed that my grandmother had had two uncles, one
2:52
Speaker 3: of which died from stomach complications at birth. Of course
2:57
Speaker 3: we're talking now in the eighteen hundreds, so presumably that
3:01
Speaker 3: was likely hirshbrungs, and the other one died at a
3:03
Speaker 3: young age, also of stomach complications. So needless to say,
3:06
Speaker 3: I think that probably gets us to five generations in
3:10
Speaker 3: our family. But it also means that I've had the
3:13
Speaker 3: fortunate position of growing up with hirshbruns, knowing what it is,
3:18
Speaker 3: having an aunt, uncle and a mother who had taken
3:20
Speaker 3: care of her younger siblings. So my mom is the
3:24
Speaker 3: one who is a real champion here in terms of
3:27
Speaker 3: taking care of a son, well really an aunt, an uncle,
3:31
Speaker 3: a son, and now a grandson who have had hirsbrungs.
3:34
Speaker 1: That's incredible, absolutely incredible, because I gut cult questions and
3:39
Speaker 1: comments quite a lot from people who said, oh, is
3:41
Speaker 1: it genetic? Is it not genetic? And the answer is
3:44
Speaker 1: sort of sometimes, there's no sort of definite you will
3:50
Speaker 1: have hirsprungs, you won't have hershungs, because, as as Sarah
3:53
Speaker 1: said in her episode, you have two children, so you
3:55
Speaker 1: have one child with hirshprungs and one child without Hirsprungs.
4:00
Speaker 3: And I also have a brother and he does not
4:03
Speaker 3: have Hirshbrungs, and neither do his two children, so the
4:07
Speaker 3: odds are that he also is not a carrier either.
4:09
Speaker 1: Yeah, Yeah, and it's it's just for me, that type
4:13
Speaker 1: of thing is just fascinating, and it's kind of, you know,
4:19
Speaker 1: in sort of how things get passed down, some things
4:22
Speaker 1: that don't get passed down because as we know, you know,
4:24
Speaker 1: when people have a child, some get passed from the mother,
4:27
Speaker 1: some get passed from the father in terms of genetics
4:31
Speaker 1: and DNA and whatnot, And it just fascinated fascinates me
4:35
Speaker 1: how what gets passed down and what kind of doesn't
4:39
Speaker 1: get passed down. Really, So you've kind of grown up knowing,
4:43
Speaker 1: as you said, growing up knowing what Hirshbrungs is from
4:48
Speaker 1: a very very young age and sort of so from
4:53
Speaker 1: that young age. And we'll talk a little bit about
4:55
Speaker 1: sports and running in a in a bit, but you've
4:58
Speaker 1: always been very active throughout throughout your life.
5:04
Speaker 2: Very active.
5:04
Speaker 3: I mean, sports was basically what I wanted to do.
5:08
Speaker 3: I soccer still my passion, played soccer my whole life,
5:12
Speaker 3: but I played basketball, I played baseball all now I've
5:15
Speaker 3: at some point I decided that I didn't want to
5:18
Speaker 3: destroy my destroy my legs, or break you know, all
5:21
Speaker 3: the things that come with being an adult playing soccer.
5:24
Speaker 3: So I started running marathons. Sports is always in big
5:26
Speaker 3: I've always been very, very active, as as as my dad, right,
5:30
Speaker 3: he was the same way.
5:31
Speaker 2: He was very active growing up, you know, And I
5:34
Speaker 2: guess that.
5:36
Speaker 3: Hirshbrungs was never it was a big part of my life.
5:39
Speaker 3: It was never even a consideration for me in terms
5:43
Speaker 3: of being being active. Right from my perspective, I have
5:48
Speaker 3: a couple of scars and that's it. You know, there
5:53
Speaker 3: is no I think the funny thing, right, obviously this
5:55
Speaker 3: is a stomach issue. And look there's certainly lingering effects, right,
6:00
Speaker 3: like I am missing up. I have short I had
6:02
Speaker 3: short segment hirshbrums. They removed part of my colon, and
6:07
Speaker 3: you know, I had three surgeries where they did an
6:11
Speaker 3: ostome and then they did the slice and dicing and
6:15
Speaker 3: pulled it through, and then they did a third or
6:17
Speaker 3: to reverse the ostome, which obviously now they've gotten to
6:21
Speaker 3: a point where they can actually, I mean case by
6:23
Speaker 3: case with remy even with a total kalan of hirshbrums.
6:28
Speaker 3: They were able to do an osteme and then do
6:30
Speaker 3: the pull through all at once. And so for me,
6:34
Speaker 3: it's like I have a couple of scars, I have
6:37
Speaker 3: some stomach issues. I probably go to the bathroom more
6:39
Speaker 3: than most people. That said, not even a consideration if
6:44
Speaker 3: I'm running a marathon, not even never a consideration. With sports,
6:49
Speaker 3: I think it's something that you are aware of, but
6:52
Speaker 3: it's not something that is going to inhibit your ability
6:55
Speaker 3: to play a full game of soccer without having to
6:59
Speaker 3: go to the bathroom.
7:00
Speaker 1: Right yeah, yeah, and I but I love that as
7:04
Speaker 1: well because it's I think when I talk to a
7:08
Speaker 1: lot of parents and they have a child born with hirshbrungs,
7:14
Speaker 1: and maybe it's something where they've never heard of the
7:17
Speaker 1: condition before, and they they think, well, what can my
7:23
Speaker 1: what can my child do? You know, are they going
7:25
Speaker 1: to be able to go to school? You know, they're
7:27
Speaker 1: going to be able to you know, play sports, a
7:29
Speaker 1: They're going to be able to do this, do that,
7:31
Speaker 1: do the other. And obviously it depends on you know,
7:34
Speaker 1: case by case, as you said, but you've kind of
7:38
Speaker 1: shown that yeah, you can, you know, run marathons, you
7:43
Speaker 1: can you know do really well in sort of the
7:49
Speaker 1: corporate side as well. And I was talking. I hadn't
7:52
Speaker 1: mentioned that yet, but we will in a bit. But
7:55
Speaker 1: it's and I love that that it's it's still kind
7:59
Speaker 1: of you. You can do anything. I guess, KNDU.
8:03
Speaker 2: There is a physical ailment.
8:06
Speaker 3: It has not prevented me from doing anything that I
8:08
Speaker 3: wanted to do with my life. And having a son
8:12
Speaker 3: with total klonic right, So the worst case it can
8:16
Speaker 3: or one of the worst cases it can possibly be,
8:19
Speaker 3: He's doing great, He's doing terrific. And you know, our
8:23
Speaker 3: goal as parents, of course, is just to give him
8:25
Speaker 3: the same advantages as every other kid, which is, you know,
8:29
Speaker 3: get him proper schooling and get him you know, give
8:32
Speaker 3: him a comfortable home and you know, give a happy life.
8:37
Speaker 3: This is just something that he's going to have to
8:39
Speaker 3: live with. And I think this is true of everybody.
8:42
Speaker 3: Everyone kind of has their thing, right. It could be
8:46
Speaker 3: it could be hersprungs, it could be that they have anxiety,
8:50
Speaker 3: it could be and a million different things. Everyone has
8:54
Speaker 3: their thing and this just might be Remy's thing.
8:57
Speaker 2: And that's fine.
8:58
Speaker 3: This was my thing, and it did not to not
9:00
Speaker 3: prevent me from doing what I said, and again, you know,
9:04
Speaker 3: I think that there there's certainly something to be said
9:08
Speaker 3: with having a mother who grew up with it, who
9:11
Speaker 3: knew how to take care of me, from having an
9:14
Speaker 3: aunt and uncle who were I guess comrades in that sense,
9:18
Speaker 3: you know. My so this we were ribbing Sarah, if
9:21
Speaker 3: anyone's listening to her episode, I think she had dated
9:24
Speaker 3: my uncle by at least ten years. So they were
9:28
Speaker 3: born in the late sixties, and so they were you know,
9:35
Speaker 3: I guess they were twenty years before I was born,
9:39
Speaker 3: and so my mom was fourteenish years older than them,
9:42
Speaker 3: if I recall correctly, ten to fourteen, So you know,
9:46
Speaker 3: she was very much helping out at that point. And
9:50
Speaker 3: with my aunt and uncle, I mean, just their history,
9:53
Speaker 3: so they both had long segment, we think. We think
9:56
Speaker 3: because they had no idea back then when they had
10:00
Speaker 3: their ostomes.
10:02
Speaker 2: There were no bags, so my mom.
10:06
Speaker 3: Recalls putting instead of the instead of like a you know,
10:09
Speaker 3: the the barrier and the bag right with the ostome,
10:13
Speaker 3: they just had aluminum paste. They would put aluminum paste
10:17
Speaker 3: around and then they would take vasiline gauze and put
10:21
Speaker 3: that around it, and then they would put regular gauze
10:23
Speaker 3: and a belly band.
10:25
Speaker 2: There was nothing to catch the stool that.
10:28
Speaker 3: Came out, and I had to remind myself of that
10:31
Speaker 3: my mom. I just said that that's gross, and she's like, yeah, well,
10:33
Speaker 3: that's what we had. My aunt had four or five
10:38
Speaker 3: colostomies done, or they just kept taking out more and
10:42
Speaker 3: more of her column until they figured out what worked.
10:47
Speaker 3: My uncle Rich was a little bit better, as I
10:50
Speaker 3: understand it, even though his was a little more urgent
10:51
Speaker 3: in terms of what he had to get his ostome.
10:54
Speaker 3: But what I recall of them growing up is they
10:58
Speaker 3: both had a lot of a lot of scars.
11:00
Speaker 2: So like we would go to the beach with my uncle.
11:02
Speaker 3: My uncle same thing, sports, golf, right, all all of
11:07
Speaker 3: the things that are normal for a kid, but his
11:09
Speaker 3: stomach looks like a maze of scars, and you know,
11:15
Speaker 3: it's it's it's so different than what we have, what
11:19
Speaker 3: I have even twenty years later, and even what Remy
11:22
Speaker 3: has right a smaller scar than that. So we've come
11:24
Speaker 3: a long way. But it hasn't really prevented them from living.
11:29
Speaker 2: A rich life either.
11:31
Speaker 3: But as as it would have it, they neither of
11:34
Speaker 3: them had biological children. My aunt adopted and my uncle
11:40
Speaker 3: married a woman who had five kids already, so needless
11:44
Speaker 3: to say.
11:44
Speaker 2: That neither of them had biological children.
11:46
Speaker 3: So it was always you know, Sarah mentioned this, It
11:48
Speaker 3: was always a thought for me, if I have biological kids,
11:51
Speaker 3: what could what could the result be? I don't think
11:54
Speaker 3: any of us could have imagined it would be as
11:57
Speaker 3: severe a case as remy, but here would be on
12:00
Speaker 3: we again, I am in a fortunate position, and he
12:03
Speaker 3: will be in the fortunate position to have others who
12:06
Speaker 3: have had long segment in my knuggle, who've had a
12:09
Speaker 3: short segment in me and can manage it and know
12:13
Speaker 3: it and sort of speak to him about some of
12:16
Speaker 3: the challenges that come with it, but also show him
12:19
Speaker 3: that there is a totally normal wafe ahead of him.
12:22
Speaker 2: Yeah.
12:23
Speaker 1: Yeah, And I think that's a great, a great way
12:27
Speaker 1: of looking at it as well. I mean, because you
12:31
Speaker 1: it's very easy to dwell on the negatives and dwell
12:35
Speaker 1: on the oh, well, I you know, I hadn't done this,
12:39
Speaker 1: or I can't do that, or you know, my stomach
12:41
Speaker 1: might hurt sometimes, or this, that and the other. But
12:43
Speaker 1: if you flip it around and you go, actually, you know,
12:46
Speaker 1: I'm still able to do this I'm still able to
12:48
Speaker 1: do that. I'm still able to play sports, do this,
12:50
Speaker 1: go to school, go to work, all that stuff. I
12:52
Speaker 1: love that, and I really love that that way of
12:56
Speaker 1: I'm thinking. It's something I try and promote very often
12:59
Speaker 1: on here. And if we talk about Remy as well,
13:02
Speaker 1: I know Sarah meant going through Remy's story a fascinating story.
13:06
Speaker 1: If no one's heard that yet, please please go back
13:09
Speaker 1: and listen to that one episode ninety two. But you
13:15
Speaker 1: are very much in charge of sort of Remy's medical procedures.
13:20
Speaker 1: Is that right?
13:21
Speaker 3: So it's medical, yes, yes, So we like to joke
13:25
Speaker 3: Sarah and I that she she's very much the general
13:29
Speaker 3: and I am. I am sort of the grunt, you know.
13:32
Speaker 3: She's a strategist and I'm the doer. And it works
13:35
Speaker 3: out very well with Remy's kind of well, he has
13:39
Speaker 3: his medical needs, so things that I'm in charge of.
13:43
Speaker 3: If Remy starts developing a rash, or certainly after his
13:46
Speaker 3: pull through when the rash was as bad as it gets,
13:51
Speaker 3: that was that was on me. When it comes to
13:54
Speaker 3: if we have to irrigate him still, which is rarely
13:56
Speaker 3: these days, usually that's that's on me. I am doing
14:02
Speaker 3: most of the diaper changes. I will change him at night,
14:06
Speaker 3: I will. I was testing out all the different things.
14:08
Speaker 2: So I think, like.
14:11
Speaker 3: I hate, I hated to hear this. Well, first let
14:16
Speaker 3: me say, Remy's doing terrific. He's almost three years old.
14:20
Speaker 3: We have gotten to the point now where there is
14:22
Speaker 3: no rash. We have gotten him down to roughly say
14:28
Speaker 3: four stools per day, most of which are in the potty.
14:33
Speaker 3: So we get him to go on the potty, and
14:35
Speaker 3: we sit with him and he goes, and so he
14:37
Speaker 3: kind of empties himself. That way, he can eat almost
14:42
Speaker 3: anything without it having any effects. We still, you know,
14:48
Speaker 3: obviously there's certain things that we don't give him. Popcorn
14:50
Speaker 3: is popcorn and corn are just absolute nos.
14:54
Speaker 2: But other than that, he lives. He lives so normally.
15:02
Speaker 3: So how did we get to hear I guess is
15:04
Speaker 3: the question? Right?
15:08
Speaker 2: When I think of the worst, when I think.
15:11
Speaker 3: Of like the PTSD or you know, however severe you
15:15
Speaker 3: want to call it, it's certainly there. It is certainly
15:17
Speaker 3: when post pull through when he had he had his
15:21
Speaker 3: his really bad rash. There's one particular night a family
15:26
Speaker 3: we had a family wedding, and we were up at
15:29
Speaker 3: the wedding. This was about three or four weeks after
15:32
Speaker 3: his pull through, and he had had some blueberries that
15:36
Speaker 3: day and he was not able to process it whatsoever.
15:41
Speaker 2: Awful awful night of.
15:43
Speaker 3: Screaming all night because he was his stomach hurt and
15:46
Speaker 3: the rash and so you know, we we said no
15:50
Speaker 3: more blueberries whatever. But that rash was just so persistent
15:55
Speaker 3: for years almost and how and we were finally we
15:58
Speaker 3: finally solved it through trial and error. And that's what
16:01
Speaker 3: I hate to hear, trial and air. What works best
16:04
Speaker 3: for your kid. We went through all all of the
16:07
Speaker 3: different creams, every single one that we ever heard of,
16:09
Speaker 3: We tried it. What we ultimately landed on that work
16:12
Speaker 3: for us is basically the thicker, the better.
16:15
Speaker 2: I think.
16:16
Speaker 3: We use Coloplasts, Triple Triad, triple cream. And then we also,
16:23
Speaker 3: you know, you hear it using as to be powder
16:25
Speaker 3: a lot. What that does is it really like kind
16:27
Speaker 3: of cakes it on there? Well, osme powder is really
16:30
Speaker 3: expensive and so at some point our doctors said, oh, well, really,
16:34
Speaker 3: you know, you can use any powder. So we use
16:36
Speaker 3: antibacterial powder and it works just the same. But like
16:40
Speaker 3: getting that really thick coat on where even if he
16:42
Speaker 3: does stool overnight.
16:44
Speaker 2: There's some level of.
16:45
Speaker 3: Protection that has really solved his rash to the point
16:49
Speaker 3: where we actually don't put rash or any diaper cream
16:52
Speaker 3: on him normally these days. We only do it if
16:56
Speaker 3: he's starting to develop a rash, and we kind of
16:57
Speaker 3: nip it into the butter early, so figuring out what
17:01
Speaker 3: kind of cream and what kind of regimen works there,
17:04
Speaker 3: and then medicine that's the other piece of it. So
17:07
Speaker 3: we were very resistant to give him any emodium for
17:11
Speaker 3: the longest time, and of course now you feel you
17:15
Speaker 3: f You're like, well, why don't we just do it earlier?
17:18
Speaker 3: Once we started giving him emodium, he takes four emodium
17:22
Speaker 3: pills per day, which when I tell a normal person that,
17:25
Speaker 3: they're like, I don't think I would go for a week.
17:28
Speaker 3: I'm like, great, that's to get us down to a
17:29
Speaker 3: baseline of four times per day.
17:32
Speaker 2: And we give him soluble fiber as well, and.
17:36
Speaker 3: That even that is a challenge in terms of, well,
17:39
Speaker 3: how will he actually take this fiber because it doesn't
17:42
Speaker 3: taste good, he doesn't like it, and so first we
17:46
Speaker 3: started mixing it in with bananas and then he was
17:48
Speaker 3: okay with that, and then he started gagging on bananas.
17:51
Speaker 3: So now I've been mixing it in with apple sauce,
17:52
Speaker 3: and that he's starting to not like that.
17:55
Speaker 2: He's not really interested in jello.
17:59
Speaker 3: Yogurt seems to be the one surefire thing, but again
18:03
Speaker 3: he has to take it every day, twice a day.
18:07
Speaker 3: And so what has helped is obviously figuring out what
18:10
Speaker 3: he likes, but also just being just being honest with him.
18:14
Speaker 3: He's almost three, and maybe having him scoop the fiber
18:18
Speaker 3: into into his apple sauce and having him crush the
18:21
Speaker 3: emodium pills up. We're not trying to hide anything. I've
18:24
Speaker 3: actually found that that has been really helpful. And then
18:28
Speaker 3: you can remind him that this is for your tummy,
18:30
Speaker 3: this will make it feel better. So the medicine has
18:33
Speaker 3: been a life changer in terms of slowing him down
18:36
Speaker 3: and also bulking him up when he does get to
18:39
Speaker 3: when he starts getting sick, now, his stool turns very watery,
18:44
Speaker 3: and you know, we're obviously so keen on it.
18:46
Speaker 2: It even has like a different odor to me.
18:49
Speaker 3: And that's when we know, okay, stop the emodium so
18:52
Speaker 3: that I can get whatever sickness he's trying to get out.
18:55
Speaker 2: YadA YadA YadA.
18:56
Speaker 3: So those are the kind of things that we are
18:58
Speaker 3: paying attention to. But also there's pooping on the potty,
19:03
Speaker 3: which has been huge. Because we are slowing him down
19:07
Speaker 3: a lot, he still needs to move everything through him
19:10
Speaker 3: and so you know, if we notice any and he
19:14
Speaker 3: streaks in his diaper, we sit him on the potty.
19:17
Speaker 3: And it took a while to get him to be
19:19
Speaker 3: okay with that. We sit him on the potty. We
19:21
Speaker 3: read some books. If things are really bad, we might
19:25
Speaker 3: show him some TV.
19:26
Speaker 2: We haven't.
19:27
Speaker 3: We bought this new like reward jar. He loves you know,
19:30
Speaker 3: he's a boy. He loves trucks, right. We bought him
19:33
Speaker 3: this jar with little plastic truck things, which is a
19:36
Speaker 3: reward jar. So every time he goes, he gets to
19:39
Speaker 3: put a truck in and he loves it. We have
19:41
Speaker 3: gotten to the point now where he does, like I said, say,
19:45
Speaker 3: most of his stools on the potty, and then he
19:48
Speaker 3: won't go overnight. He won't have to go overnight. That
19:52
Speaker 3: is how you get the rash better. You give it
19:54
Speaker 3: a while to actually heal itself. That along with cream,
20:00
Speaker 3: along with the medicine, all of these factors together have
20:03
Speaker 3: like gotten us to this point. It has taken two
20:06
Speaker 3: years to get here. It has come with a lot
20:09
Speaker 3: of bumps, but we are here, and you know, for
20:13
Speaker 3: a long segment not a long side of a total
20:14
Speaker 3: cloud of Hirschbrung's kid to get here. The doctor is
20:17
Speaker 3: in DC are thrilled. They're a terrific team who are
20:21
Speaker 3: very helpful. But ultimately it was really on on Sarah
20:24
Speaker 3: and I and as the you know, as the grunt
20:27
Speaker 3: in this case, and the scientists to try to figure
20:30
Speaker 3: out what works. We finally got there, and of course
20:34
Speaker 3: you look at the Hirshbrungs groups to figure out what
20:35
Speaker 3: others are doing and hopefully find something that works for you.
20:39
Speaker 2: We tried them all, finally gone one that worked.
20:42
Speaker 1: But that's brilliant, I mean, and you're right, I mean,
20:45
Speaker 1: trial and error can be such a such a pain
20:48
Speaker 1: actually in a lot of senses.
20:50
Speaker 3: You just want the answer, right Like you're if your
20:54
Speaker 3: child is screaming at two in the morning because there's
20:56
Speaker 3: tummy hurts or they have an awful rash. You just
20:58
Speaker 3: want the answer. And it feels like such a cop
21:01
Speaker 3: out to say trial and error, but that's that's the
21:05
Speaker 3: answer is. You just have to keep going and remember
21:09
Speaker 3: too that he is getting older and so therefore it
21:14
Speaker 3: is getting easier. He can tell us if my, if my,
21:18
Speaker 3: if he says, my tummy hurts, we know that, oh,
21:21
Speaker 3: we probably have to go to the bathroom. That's just
21:25
Speaker 3: not something that happens when you have, you know, a
21:27
Speaker 3: newborn or even a two year old for that matter.
21:31
Speaker 3: So it gets better over time, and then they are
21:35
Speaker 3: able to help you.
21:37
Speaker 2: But in the meantime, you have to figure it out
21:39
Speaker 2: for yourself.
21:41
Speaker 1: You do, yeah, and that's that's the really really difficult bit.
21:45
Speaker 1: But as you said, when he or now that he's
21:48
Speaker 1: obviously a communicating stage, it then becomes an awful lot easier.
21:53
Speaker 1: Whereas if, like you said, from zero to two or
21:57
Speaker 1: from zero to one, that communications stage is really really tough,
22:02
Speaker 1: and you you're sort of trying to I guess, trying
22:05
Speaker 1: to find signs and patterns and things that right, well,
22:09
Speaker 1: you know, if this happens, we need to do this
22:13
Speaker 1: type thing.
22:14
Speaker 2: Mm hmm. That's exactly yeah, that's exactly right.
22:19
Speaker 3: But we you know, I don't know if everyone is
22:22
Speaker 3: the same, but the pattern with Remy often is that
22:27
Speaker 3: he will again most of the most of the stooling
22:29
Speaker 3: happens in the afternoon or before bedtime, and so it's
22:33
Speaker 3: almost like he kind of fills himself up during the
22:35
Speaker 3: day and then it kind of like comes out in
22:39
Speaker 3: the evening.
22:40
Speaker 2: And that's just Remy's pattern.
22:43
Speaker 3: You know, he still frequently stools in his diaper overnight,
22:48
Speaker 3: but like I said, it is it has worked just
22:51
Speaker 3: fine for us, and it usually if he does sort
22:53
Speaker 3: of like empty himself when he's sleeping, that just means that, Okay,
22:57
Speaker 3: well we're gonna go into the day.
22:58
Speaker 2: He can go to school in the morning.
23:00
Speaker 3: And the teachers don't have to worry about him having
23:03
Speaker 3: to go to the bathroom because it doesn't It's not
23:05
Speaker 3: like a normal presumably a normal person. I am not
23:07
Speaker 3: a normal person where you feel like you have to go,
23:10
Speaker 3: you go, and then that's you know the story. It's
23:15
Speaker 3: a lot more sitting and you know, playing and just
23:19
Speaker 3: kind of keeping him relaxed, and then at some point
23:22
Speaker 3: he's going to start going. And it's funny because, like
23:26
Speaker 3: so one of the things I learned through Remy is
23:30
Speaker 3: all about the anatomy of having two sphincters, so you
23:35
Speaker 3: have an external sphincter, which Hirshbrun's kids can they can
23:39
Speaker 3: control that, right, But then you also have an internal sphincter,
23:44
Speaker 3: which Hirshbrung kids cannot control because it's in the rectum
23:48
Speaker 3: or whatever. Because they don't have the ganglan cells there.
23:51
Speaker 3: They cannot control that inner sphincter. But that sphincter still
23:55
Speaker 3: is there, and so in order for you to pass,
24:00
Speaker 3: you have to be able to push through that. And
24:03
Speaker 3: so when Remy goes, you know, you can see his
24:06
Speaker 3: face turns red and it's just like it's really gross.
24:11
Speaker 3: But that's how he has to get it out. And
24:13
Speaker 3: of course that's the other thing that I learned about myself.
24:16
Speaker 3: I'm like, wait a minute, so you're telling me that
24:18
Speaker 3: I cannot control even with a short segment, I can't
24:21
Speaker 3: control my internal sphincter, which means that I have like
24:25
Speaker 3: it takes more effort for me to push the stool out. Now,
24:29
Speaker 3: as I understand that the difference is that I have
24:30
Speaker 3: a large intestine, or at least a portion of my
24:32
Speaker 3: large intestine, which makes it easier for me. Remy does not,
24:38
Speaker 3: And as our surgeon in DC said, the small intestine
24:43
Speaker 3: is wimpy, and so it took a little bit longer
24:46
Speaker 3: for him to figure it out. And so that's why
24:48
Speaker 3: you get round to botox, as we got for him
24:51
Speaker 3: to allow him to relax it. We got botox for
24:54
Speaker 3: him twice. That's when he started to really learn to
24:56
Speaker 3: go on the potty. And at some point when we
24:59
Speaker 3: thought that we'd have to get botox again, he ended
25:02
Speaker 3: up figuring out for himself. So we're in a really
25:07
Speaker 3: good place now. But it does, you know, it does
25:09
Speaker 3: sort of lead to I think some humor here, right,
25:13
Speaker 3: which is not having an internal sphincter also means that
25:19
Speaker 3: in order to pass gas you have to push it out,
25:23
Speaker 3: which you know, if the worst thing for me is
25:27
Speaker 3: that I'm gassed all the time because I have hrshrungs,
25:30
Speaker 3: it also means that in order to get that gas out,
25:32
Speaker 3: I have to push it out, which has led, you know,
25:35
Speaker 3: all of my friends growing up to to give me, you.
25:39
Speaker 2: Know, nicknames with love.
25:41
Speaker 3: My my college friends call me Fardy Mark, which you know,
25:46
Speaker 3: it's an earned nickname. I also have to remind my
25:50
Speaker 3: wife Sarah that.
25:52
Speaker 2: You know, I've got hirshpruns and I can't help it.
25:56
Speaker 2: I don't.
25:57
Speaker 3: I don't know that she you know, well does say
26:00
Speaker 3: that she doesn't love it.
26:01
Speaker 2: It's true. It's true, though.
26:04
Speaker 1: I think we have an excuse for life. It's not
26:07
Speaker 1: all full.
26:08
Speaker 2: It's not our fault. But you know, she does say
26:10
Speaker 2: like maybe you can go to the other room. I'm like,
26:12
Speaker 2: all right, that's fair. I like, yeah, this thing these
26:16
Speaker 2: are hey, you know what, these are normal conversations in
26:18
Speaker 2: any marriage, right.
26:19
Speaker 1: Absolutely, absolutely, well, I think although it's not all fault
26:24
Speaker 1: because it comes on suddenly and we can't you know,
26:26
Speaker 1: nothing we can do.
26:28
Speaker 2: It's a lot.
26:29
Speaker 3: It is a large volume of gas. I don't like
26:33
Speaker 3: it is too much gas, but you got it. You know,
26:37
Speaker 3: you have to get it out. And so you know,
26:40
Speaker 3: there's a long history there with my friends growing up,
26:43
Speaker 3: with my college friends.
26:45
Speaker 2: But look, I work. I work at work at Bloomberg.
26:48
Speaker 3: I work.
26:50
Speaker 2: In a corporate environment and always have. We have very
26:54
Speaker 2: long meetings.
26:54
Speaker 3: It's again, this is this is not something I'm thinking
26:57
Speaker 3: about as I'm in a meeting. It's just something that
27:01
Speaker 3: is a fact of life. And you know, when you
27:04
Speaker 3: go outside in the morning and you're walking the dog,
27:06
Speaker 3: like you know, you that's your time to decompress.
27:10
Speaker 2: Literally exactly.
27:14
Speaker 1: No, that's great because I've I've long held that belief
27:17
Speaker 1: that it's not our fault and that we should be
27:20
Speaker 1: given sort of you know lee way, a lot of leeway, a.
27:25
Speaker 3: Long lee way, Yes, very very long leash. But you know,
27:30
Speaker 3: I think we've Yeah, like I said, I'm interested so
27:34
Speaker 3: as it as it comes back to you know, Remy
27:38
Speaker 3: h and any for that matter, I think the reality
27:41
Speaker 3: is that, you know, gas gas is very funny for boys,
27:47
Speaker 3: and so you know, Remy will be well, you know,
27:50
Speaker 3: it was always funny for me and my friends, and uh,
27:54
Speaker 3: you know, presumably for Remy. I have not asked my
27:57
Speaker 3: aunt about this, presumably know it's a.
28:00
Speaker 2: Very different situation.
28:01
Speaker 3: But I do think there's certainly some some element of
28:04
Speaker 3: of you know, social uh, there's a social aspect of this,
28:09
Speaker 3: you know, as I understand it. I think I think
28:12
Speaker 3: my att Knuckle had mentioned to me at some point
28:14
Speaker 3: that growing up, they used to you know, they used
28:18
Speaker 3: to wait or try to wait until they got home
28:20
Speaker 3: or somewhere more private to go the bathroom. Because it
28:23
Speaker 3: just doesn't you know, especially with long segment or total klonic.
28:27
Speaker 3: You know, we're talking about a lot of unprocessed stool.
28:31
Speaker 3: It's not as it's not as really terrible. Let's be
28:33
Speaker 3: let's be clear, Remy, Remy really really puts the you know,
28:38
Speaker 3: puts us in our place when he goes. But we're
28:40
Speaker 3: all cheering for him because of course he's learning. But
28:44
Speaker 3: I think there's definitely a bit of that, and I
28:46
Speaker 3: know that when we speak with other parents and even
28:49
Speaker 3: look on the Facebook groups.
28:52
Speaker 2: As we approached.
28:53
Speaker 3: Remy going to kindergarten in a couple of years, getting
28:56
Speaker 3: teacher's aides or getting him access to a special bathroom
28:59
Speaker 3: is something that we're thinking about, even as long as
29:03
Speaker 3: maybe in college. We spoke with a family friend who
29:06
Speaker 3: so happened to have hirshbrunks. Her son now just had
29:08
Speaker 3: his first kid, who does not have hirshbrums by the way,
29:12
Speaker 3: but he had long segment and even when he went
29:14
Speaker 3: to college, they asked for a sort of special access
29:17
Speaker 3: or I think a dorm room with its own bathroom.
29:21
Speaker 3: So I think that that's the other thing to think
29:23
Speaker 3: about as well, is when there is special attention needed,
29:27
Speaker 3: you can almost always ask for it because it is
29:30
Speaker 3: a real condition and it is something that people do
29:33
Speaker 3: have to manage. I am fortunate enough where I don't
29:36
Speaker 3: feel like it has changed my daily activities, but it
29:41
Speaker 3: doesn't mean that it's not for everybody, and Remy might
29:43
Speaker 3: fall into that category as well. But again, I think the.
29:49
Speaker 2: We are hyper aware of it and will always give
29:52
Speaker 2: him what's best for him, just like we would do
29:55
Speaker 2: to any other kid, whether they have hirshbrunks or not.
29:58
Speaker 2: It's just his thing.
30:00
Speaker 1: Yeah. Absolutely, I think you're right there with sort of
30:03
Speaker 1: special dispensation because and possibly hirshbrungs people not being aware
30:11
Speaker 1: that they can ask for it. I mean even you know,
30:14
Speaker 1: like obviously you and I have have short segment, but
30:18
Speaker 1: I don't think I ever thought about, you know, asking
30:22
Speaker 1: for special dispensation for bathrooms or you know this that
30:27
Speaker 1: the other I think I think it's possibly about making
30:30
Speaker 1: people and sometimes as well. We know this when you
30:34
Speaker 1: mentioned hirshbrungs to ninety nine percent of people in the world,
30:39
Speaker 1: they have no idea what you're talking about, So it's
30:42
Speaker 1: I think it's also about making people aware. I guess
30:44
Speaker 1: as well.
30:45
Speaker 3: Yeah, one in five thousand is sad that we always hear.
30:49
Speaker 3: But I think you and I when we when we
30:51
Speaker 3: spoke before we did the math in terms of if
30:54
Speaker 3: this is your one hundred and fifth episode, you know
30:57
Speaker 3: you're getting up there in terms of percentages of of
31:00
Speaker 3: people who you can maybe contact, you have hirshprunks in
31:03
Speaker 3: the world, and so you know, at the end of
31:05
Speaker 3: the day, like it is a small it is a
31:07
Speaker 3: small community. It's wild to think that I have four
31:11
Speaker 3: living family members who have this disease. We're we're going
31:18
Speaker 3: to Thanksgiving on this Thursday, and we said we have
31:23
Speaker 3: to get we have to get a family photo of
31:25
Speaker 3: you know, the three generations of hirshbrun kids and we
31:28
Speaker 3: can show off our scars. Coincidentally, my mother had had
31:34
Speaker 3: rectal cancer a few years back, and she also had
31:37
Speaker 3: to have an iliostomy, which the doctors assured her that
31:42
Speaker 3: this had nothing to do with Hirshbrungs. But you know,
31:46
Speaker 3: we were also assured that Remy didn't have Hirshprungs in
31:48
Speaker 3: the hospital as well. It seems far too on the
31:51
Speaker 3: nose to me to be a coincidence, but you never know.
31:56
Speaker 1: But yeah, absolutely, no, you're you're right. I mean, I
32:00
Speaker 1: know and said when when Sarah talked about Romy's story,
32:03
Speaker 1: you know, you were you were almost sort of you know,
32:06
Speaker 1: told out right, oh no, no, no, it's definitely not
32:09
Speaker 1: gonna be Hersprungs. It's not. And the amount of times
32:11
Speaker 1: I get told in various episodes where people have had
32:15
Speaker 1: doctors say to them, Oh, it can't be passed on.
32:18
Speaker 1: Oh it's definitely not, and it's rubbish like its it.
32:23
Speaker 2: It's it's unique. I guess it's it's unique.
32:27
Speaker 3: I think the way that I've sort of, I don't
32:29
Speaker 3: know that I've necessarily come to terms with it, because
32:32
Speaker 3: it obviously creates such a stress. But you know, doctors,
32:36
Speaker 3: doctors are scientists at the end of the day, and
32:38
Speaker 3: the way that scientists approach things, they like to eliminate
32:41
Speaker 3: everything before they get to the answer, So eliminate what
32:44
Speaker 3: it isn't. And the reality is that heirsprungs, you know,
32:47
Speaker 3: unless you do you know, the Gold centers to do
32:51
Speaker 3: a biopsy. Unless you do a biopsy, you're not going
32:54
Speaker 3: to know for sure. And so they're not going to
32:58
Speaker 3: do that somewhat in BASI procedure unless they have to.
33:02
Speaker 3: And so they will continue to try to eliminate things
33:06
Speaker 3: until they finally figure out that it is Hirshbrungs. Even
33:09
Speaker 3: if you tell them that I have a family history
33:12
Speaker 3: of Hirshbrungs and I myself had Hirshbrungs. So you know, again,
33:17
Speaker 3: growing up with Hirschbrungs is interesting because I've always known
33:21
Speaker 3: about it, and so you know, even I was thinking
33:24
Speaker 3: about this one. This must have been one of my
33:27
Speaker 3: very earliest memories. Is like, what the lasting impacts has
33:31
Speaker 3: it had on me? Nothing lasting, but I do recall
33:35
Speaker 3: having accidents, especially overnight, for a long time. I don't
33:41
Speaker 3: know for sure, but I would say until I was five,
33:44
Speaker 3: maybe even six. I can recall my mom after having
33:51
Speaker 3: an accident, washing me in the kitchen sink, which actually
33:55
Speaker 3: sounds gross when I say it, but you know that
33:59
Speaker 3: that has to be one of my earliest memories, the
34:01
Speaker 3: fact that I fit in the kitchen sink. But you know,
34:05
Speaker 3: it also kind of reminds you that kids, very young children.
34:10
Speaker 2: Remember more than we give them credit for.
34:14
Speaker 3: And so you know, remy coming up on the age
34:17
Speaker 3: of three, you know, he's he is going to remember
34:21
Speaker 3: these traumatic experiences and and so obviously if if something
34:26
Speaker 3: comes up, but especially with something like if we have
34:29
Speaker 3: to irrigate him. That's one of my earliest memories. Again
34:32
Speaker 3: is doctor Schullinger, who was my surgeon. He had to
34:37
Speaker 3: stick his his pinky. I think it was pinky at
34:41
Speaker 3: the time, it felt a lot bigger than a pinky.
34:43
Speaker 3: But he had to stick it up my butt so
34:45
Speaker 3: he could check the scar that the scarring was healing appropriately.
34:49
Speaker 3: And again I had my surgeries and I was one
34:51
Speaker 3: year old. I must have been two or three, and
34:54
Speaker 3: I can recall this. So needless to say, our kids
34:58
Speaker 3: are not going to remember very much much. Well, they're
35:01
Speaker 3: gonna remember that the parents are there. They are going
35:06
Speaker 3: to remember that some things did happen, but ultimately these
35:10
Speaker 3: are necessary things that they can live a long and
35:13
Speaker 3: healthy life. And so if it takes you know, doctor
35:18
Speaker 3: Schollinger sticking a finger by butt to make sure everything
35:20
Speaker 3: is healing, great, fine, I remember it.
35:23
Speaker 2: I'm not thinking about it every day. Yes.
35:28
Speaker 3: Coincidentally, my aunt Nancy, who is a little bit older,
35:31
Speaker 3: when she had her ostome. My mom loves to recall
35:35
Speaker 3: when she told doctor Shellinger, like, don't stick your finger
35:38
Speaker 3: up my butt. So it's come a long way, but
35:43
Speaker 3: that has not evolved.
35:46
Speaker 2: That is on. That is still how doctors are checking.
35:50
Speaker 3: You know, I Sarah told the story about when Remy
35:53
Speaker 3: got like how advance is missed and become when your surgeon,
35:57
Speaker 3: when your son has a prolapsed ostome tells you to
35:59
Speaker 3: put some sugar on it and it'll go back in.
36:02
Speaker 1: But it works.
36:04
Speaker 2: It works.
36:05
Speaker 1: Yeah, who.
36:07
Speaker 3: It's it's so rudimentary, but a lot of this stuff fizz.
36:10
Speaker 3: It's like, great, you have an astony. What are we
36:13
Speaker 3: gonna do.
36:14
Speaker 2: Well, we're gonna cut a little hole in a with
36:17
Speaker 2: in a a.
36:20
Speaker 3: A sticker and we're gonna stick it on, and then
36:22
Speaker 3: we're gonna put a bag on it and then it's
36:24
Speaker 3: gonna catch the stool.
36:26
Speaker 2: Great, great, change that every other day.
36:30
Speaker 3: Yeah, uh great, we're going and then you know, they
36:32
Speaker 3: do a pull through and it's like, okay, great, now
36:34
Speaker 3: we're just gonna use diaper cream and then we're gonna
36:37
Speaker 3: use a modium and we're gonna use five. None of
36:39
Speaker 3: this is is you know, we're not we're not coming
36:43
Speaker 3: very far. When it comes to the medicine of this,
36:47
Speaker 3: it's a It is the physical ailment of you don't
36:50
Speaker 3: have nerve endings. We're gonna cut that piece out, we're
36:52
Speaker 3: gonna reattach it, and then you might have some lasting issues,
36:57
Speaker 3: could be worse.
36:58
Speaker 1: Yeah, I think it's Yeah, I think it's incredible, absolutely incredible,
37:03
Speaker 1: but sort of just sort of circling back to you
37:05
Speaker 1: as well. I know in Sarah's episode she talked about
37:09
Speaker 1: a five K that you were going to run. I
37:12
Speaker 1: think yes, when we recorded it, you hadn't run it yet.
37:18
Speaker 1: Obviously you completed that five K. I imagine i'd imaginem
37:22
Speaker 1: for a guy who's done a few marathons, five K
37:24
Speaker 1: is not exactly the hardest thing in the world. But
37:28
Speaker 1: you raised quite a bit of money as well. Do
37:31
Speaker 1: you have the final figure?
37:34
Speaker 3: It was over twenty three thousand, twenty three, four hundred
37:38
Speaker 3: and twenty three.
37:39
Speaker 1: Is that right, Yeah, fantastic.
37:41
Speaker 2: It's good.
37:42
Speaker 3: I work in finance, so I need to remember the numbers. Look,
37:47
Speaker 3: my wife, when Sarah, when she said that she wanted
37:49
Speaker 3: to raise money, I remember her asking me like, are
37:51
Speaker 3: you okay with this? And I said, of course, I'm
37:53
Speaker 3: okay with this. But I think the reality is we
37:56
Speaker 3: hadn't We hadn't talked about remy story that public yet,
38:00
Speaker 3: and certainly not to our friends. Well maybe our friends,
38:04
Speaker 3: but not to the degree of that. You know, extended
38:09
Speaker 3: family were aware, but maybe not to the degree, but
38:11
Speaker 3: certainly our co workers didn't know as much, and our
38:15
Speaker 3: our you know, acquaintances they weren't maybe aware of the
38:19
Speaker 3: extent of it, and so I think for Sarah was
38:22
Speaker 3: something that was really powerful. And we raised twenty three
38:26
Speaker 3: thousand dollars, which is really unbelievable. The race itself, the
38:31
Speaker 3: five k down in Washington, d C. Which was held
38:34
Speaker 3: by Children's National, it was really really terrific. I mean,
38:39
Speaker 3: the five k was great. There were some I think
38:42
Speaker 3: I had over five ten thousand registrants, which for a
38:45
Speaker 3: five k is is a lot. You know, you're running
38:48
Speaker 3: through the Washington, d C Mall, which is cool. You know,
38:52
Speaker 3: I was running not that bad. I was running fine,
38:55
Speaker 3: So I was called it middle of the pack and
38:58
Speaker 3: ahead of me were some really really fast runners and
39:01
Speaker 3: behind me were a lot of people with their families
39:03
Speaker 3: bushing stroller.
39:04
Speaker 2: So it was really really really lovely day.
39:07
Speaker 3: And then after they did the five k, they had
39:09
Speaker 3: the kids race, and so Remy ran in the threes
39:14
Speaker 3: and it was so wonderful what Children's National did at
39:17
Speaker 3: the They had all of the nurses and some of
39:19
Speaker 3: the doctors dressed up as superheroes and Disney princesses. Our
39:24
Speaker 3: kids were in heaven. All the kids were in heaven,
39:26
Speaker 3: and they had them all waiting at the finish line.
39:28
Speaker 3: It was one hundred meters and so Remy ran it.
39:32
Speaker 3: We had him in a superhero cape. I took one
39:35
Speaker 3: of my favorite photos that I think I'll ever take
39:37
Speaker 3: of him just running and it's just so happy. And
39:40
Speaker 3: then Emma, our oldest daughter, ran it as well. We
39:45
Speaker 3: had such a really really great time doing it and
39:47
Speaker 3: something that we're going to make an annual tradition.
39:51
Speaker 2: Brilliant.
39:51
Speaker 1: That's absolutely fantastic. And congratulations as well. I'm raising over
39:55
Speaker 1: twenty three thousand dollars. I mean, I had, as Sarah
39:59
Speaker 1: Sarah said, you know that that money is going specifically
40:03
Speaker 1: to helping people with medical supplies, for.
40:11
Speaker 3: Supplies with with traveling to to d C if they
40:15
Speaker 3: need it. And even since then, you know, during during
40:19
Speaker 3: our trip down to Washington, d C, we saw we
40:22
Speaker 3: saw our care team and you know, they were talking
40:26
Speaker 3: to us as well about how the money is going.
40:28
Speaker 3: It's helping families who might be in a more rural area,
40:33
Speaker 3: who who have no access to care at all, help
40:37
Speaker 3: them get to d C or get to Cincinnati, which
40:40
Speaker 3: is another has another terrific correctal practice, or you know,
40:45
Speaker 3: or Denver or you know, I don't know about California. Yeah,
40:50
Speaker 3: we have not yet explored the US hospital system in
40:53
Speaker 3: California yet with Remy, and we hope not to. But yes,
40:57
Speaker 3: it it feels it's something at the end of the
41:00
Speaker 3: da it's something very small that we can give back
41:03
Speaker 3: for others. And again, we are in a fortune position
41:06
Speaker 3: where we can travel to DC and we we did
41:09
Speaker 3: have access to some of the best care and we
41:11
Speaker 3: just want others to who might not be in the
41:13
Speaker 3: same position to have access as well.
41:17
Speaker 1: I think that's fantastic. That is fantastic again, fantastic work
41:20
Speaker 1: on raising so much, and it sounded like a brilliant
41:25
Speaker 1: day as well, So I think it's all all good,
41:27
Speaker 1: all round.
41:28
Speaker 2: I reckon all good, all around.
41:30
Speaker 3: And all the credit goes to Sarah for organizing the fundraiser,
41:35
Speaker 3: sending out the emails, and I mean for anybody who
41:39
Speaker 3: any of our friends and family who are listening, just
41:42
Speaker 3: absolutely overwhelmed with the amount of support that we received from,
41:49
Speaker 3: you know, even even the expected places and the unexpected
41:53
Speaker 3: as well. And you also hear, you hear stories of
41:57
Speaker 3: people who you didn't realize we're dealing with something similar.
42:02
Speaker 2: You know, they hear Remy story and it's just you.
42:04
Speaker 3: Learn a little bit more about them. Like I said,
42:08
Speaker 3: everyone has their thing and you just don't really know
42:11
Speaker 3: unless you ask or if somebody in our case broadcasts
42:15
Speaker 3: it too to this small community. Yes, we are we
42:20
Speaker 3: you know we are. I think if nothing else we are.
42:26
Speaker 3: We are in a really good place. And Remy is
42:30
Speaker 3: going to have a terrific life. I have you know,
42:32
Speaker 3: there is no now. We are on the normal things
42:34
Speaker 3: of potty training in school and sharing right, the normal
42:39
Speaker 3: things that come along with being a kid, and giving
42:43
Speaker 3: him extra medicine every day is just part of our routine.
42:48
Speaker 3: And we hope that if anybody has any questions or
42:51
Speaker 3: want to chat with Sarah or me, I know that
42:55
Speaker 3: we're happy to do so as well.
42:58
Speaker 1: That's absoutely fantastic because I think, I mean both of you.
43:01
Speaker 1: Having now interviewed both of you, I think you are
43:04
Speaker 1: incredible people to have in the Hirshpruns community, you know,
43:08
Speaker 1: I mean the stories you've both told obviously the family
43:12
Speaker 1: history as well, and the success you both have is
43:16
Speaker 1: absolutely incredible and I love it. And I was going
43:20
Speaker 1: to finish by asking sort of the future for Remy,
43:24
Speaker 1: but I think you've just told it so I'm going
43:26
Speaker 1: to ask you another question instead, and it will be
43:29
Speaker 1: kind of the future for you. I guess you mentioned
43:33
Speaker 1: obviously work for Bloomberg, you have run four marathons. I
43:39
Speaker 1: guess in terms of for you in your I know
43:42
Speaker 1: you said your hirshprungs you don't think about it too
43:45
Speaker 1: much as life goes on. But what would you like
43:49
Speaker 1: for you future wise?
43:52
Speaker 2: I think the same thing as everybody.
43:53
Speaker 1: Right.
43:53
Speaker 3: We are raising two wonderful kids. I would like professional development.
43:59
Speaker 3: I would like uh, you know, my kids to continue
44:02
Speaker 3: to excel and be healthy. I would like to have
44:05
Speaker 3: a rich family life. You know, It's like I said,
44:09
Speaker 3: Hirst Bruns, is not something I'm thinking about every day.
44:12
Speaker 3: It's just something that I've lived with, and I just
44:15
Speaker 3: want the same thing for myself as anybody wants, which
44:19
Speaker 3: is just happiness, and you know, happiness for myself, happiness
44:24
Speaker 3: for my family, my friends, and of course for my children.
44:29
Speaker 3: Part of that, of course, is caring for Remy and
44:31
Speaker 3: making sure that he knows that this is a physical ailment,
44:35
Speaker 3: that is something that you live with. It is not
44:37
Speaker 3: a barrier to doing anything that you will want to do.
44:42
Speaker 3: And so you know, the what is in what is.
44:45
Speaker 2: In my future.
44:45
Speaker 3: It's just giving my kids the life that that I
44:50
Speaker 3: was able especially remy right with this this case, giving
44:52
Speaker 3: him the life that that i'd able to have, which
44:54
Speaker 3: is whatever I wanted to do.
44:57
Speaker 2: I've went out and done it, and the same think
45:00
Speaker 2: for my daughter.
45:02
Speaker 1: I think that's absolutely fantastic. I just want to say
45:04
Speaker 1: thank you so much, I mean to you, to Sarah,
45:08
Speaker 1: to your whole family for for sharing these stories and
45:11
Speaker 1: for also celebrating my second anniversary with me. It's it's
45:15
Speaker 1: been It's been an absolute pleasure chatting to you, and
45:19
Speaker 1: I wish you all just the very very best for
45:23
Speaker 1: the future.
45:24
Speaker 2: Hey, congrats on two years. It's a big achievement. One
45:26
Speaker 2: hundred and five.
45:27
Speaker 3: I guess said, we're you're You'll have to calculate the
45:29
Speaker 3: percentile of people you've spoken with and then when you
45:33
Speaker 3: when you get the energy for the next one hundred
45:35
Speaker 3: and five, you know you can keep keep ticking up.
45:39
Speaker 1: Will I'm not as good as numbers as you are, though.
45:43
Speaker 2: Okay, I'll get you. I'll get to spreadsheet in order
45:45
Speaker 2: for you.
45:47
Speaker 1: Amazing. Thank you so much, Mark, and to get all
45:51
Speaker 1: the very best to you and your family for the future.
45:55
Speaker 1: Thanks Tom, Thank you, Thank you for listening and being
46:01
Speaker 1: part of this growing community. If you have enjoyed the episode,
46:04
Speaker 1: don't forget to subscribe, leave a review, and share it
46:07
Speaker 1: with someone who might need it. You can connect with
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Speaker 1: us on social media via Instagram, Facebook, and TikTok under
46:14
Speaker 1: the name Tom's Hirshprung's Podcast. See you next week.