Latest / Tom's Hirschsprung's Podcast / Episode 35 - With Nicole and Benjamin Perry

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Episode 35 - With Nicole and Benjamin Perry · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshbrun's Podcast, where I provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshprung's disease and sports.
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Speaker 2: Hello and welcome to episode thirty five, Tom's Hirshbrums Podcast.
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Speaker 2: It's a double guest one for today's episode. I am
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Speaker 2: joined by Nicole and Benjamin Perry. Welcome to the podcast.
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Speaker 3: Thank you so much for having us.
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Speaker 2: We're exit absolutely my pleasure. I know we were talking
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Speaker 2: about a little bit off air about my apologies and
1:02
Speaker 2: not having you on sooner, because both of you are
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Speaker 2: absolutely perfect for this podcast, as will kind of divulge
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Speaker 2: and go on to in the future. And there's a
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Speaker 2: lot of similarities between Benjamin your story and my story
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Speaker 2: in terms of advocacy, so well, we'll go into that
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Speaker 2: as well later on, but we will start from pretty
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Speaker 2: much the beginning, or not quite the beginning, kind of
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Speaker 2: twenty two months in Benjamin being diagnosed with hirsch bruns.
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Speaker 2: Do you want to talk a little bit about sort
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Speaker 2: of just pre diagnosis from birth and then leading up
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Speaker 2: to the diagnosis from there.
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Speaker 3: Absolutely, so. Benjamin is a twin him and his twin
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Speaker 3: were born at thirty six and a half weeks, so
1:52
Speaker 3: they were early. They were pretnyth Both were in the
1:55
Speaker 3: nick You. Bentley is his brother's name. He was in
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Speaker 3: for growing and feeding and Benjamin just kind of They
2:02
Speaker 3: couldn't pinpoint what was wrong with Benjamin. So he did
2:07
Speaker 3: have a very small but burst stool, if you will.
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Speaker 3: So Hirshpruns was never on the table for us. So
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Speaker 3: initially they diagnosed Benjamin with a milk protein allergy, and
2:22
Speaker 3: while in the nick You, Benjamin received donor milk and
2:26
Speaker 3: then we then went to a special formula, neo Kate,
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Speaker 3: and he did that and Benjamin just wasn't growing and
2:35
Speaker 3: he just kind of was lethargic y. John to set
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Speaker 3: pretty much the first few months of his life, and
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Speaker 3: I would take him to the er because he wasn't
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Speaker 3: an eating or whatnot, and they would just say, you know,
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Speaker 3: oh he's constipated or oh you know, it's just his
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Speaker 3: milk protein allergy. Will give him some IV fluids and
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Speaker 3: he'll be fine. And we had gone to disney Land
2:56
Speaker 3: when they were about eighteen months old, and we had
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Speaker 3: spent a day on the beat and I kind of
3:01
Speaker 3: looked at my husband and I said, man, he kind
3:03
Speaker 3: of looks like a little pregnant baby. His stomach is
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Speaker 3: just so distended. And I said, I really want to
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Speaker 3: pursue this with the doctors, like I really want to
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Speaker 3: figure out what's wrong. And I do have an uncle
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Speaker 3: who's an er doctor, and I kind of touched base
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Speaker 3: with him and I'm like, you know, these are kind
3:21
Speaker 3: of the things I'm seeing, and you know, he told
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Speaker 3: me things to advocate for and whatnot. So we go
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Speaker 3: into a children's hospital here in Denver and basically they're like,
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Speaker 3: you know, nothing's wrong. We go to the ear nose
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Speaker 3: and throat specialists, and we go to the GI specialists.
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Speaker 3: We go to all these specials. Everybody's like, nothing's really
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Speaker 3: wrong here. And I'm like, no, you guys, there's something
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Speaker 3: really wrong with my baby. Like I am a thousand
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Speaker 3: percent certain there is something wrong with him. Like can
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Speaker 3: we do X rays? Can we do biopsies? Whatever? And
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Speaker 3: kind of got a lot of pushback, and finally they
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Speaker 3: were like, let's do an X ray. So they do
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Speaker 3: a set of X rays and I mean from the
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Speaker 3: ray alone, I mean it was just swirly balls of mess, right,
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Speaker 3: And they looked at me and they go, He's good,
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Speaker 3: he just has some constipation all as well. And so
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Speaker 3: I take it back. I email it to my uncle
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Speaker 3: who's a doctor, and he goes, Nicole, you need to
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Speaker 3: fight this. He goes and intestine is supposed to look
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Speaker 3: like a rainbow, and that certainly is not a ring.
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Speaker 3: And I was like, right, So I take it back,
4:23
Speaker 3: and I'm like, you, guys, listen, I have consulted my
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Speaker 3: uncle who's a doctor. I have talked to numerous friends
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Speaker 3: and family, and I just I really really want to
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Speaker 3: push for a biopsy. And in fact, this is probably
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Speaker 3: the hardest part of our story to tell my husband
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Speaker 3: and I. It's my husband's first set of children were
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Speaker 3: twins and I had had a ten year old daughter,
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Speaker 3: and so we're in the hospital and I'm, you know,
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Speaker 3: begging for this biopsy and we're in like a parent
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Speaker 3: meeting room, so a mini conference room, I guess you
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Speaker 3: would say, very small room. And they ask my husband
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Speaker 3: to please leave the room. The doctor and a nurse
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Speaker 3: come and grab my husband say can we priest talk
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Speaker 3: to you privately, and left me in the room and
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Speaker 3: basically interrogated my husband and said, listen, we think your
5:12
Speaker 3: wife has Munchausen biproxy. Do you think there's something really
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Speaker 3: wrong with your son or do you think your wife is,
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Speaker 3: you know, maybe has a mental illness or all these things.
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Speaker 3: And my husband's like, no, like, there's something wrong with
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Speaker 3: our son. And they said, how much do you trust
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Speaker 3: your wife? And he said, well, one hundred percent, like
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Speaker 3: she's certain there's something wrong with our son. And they go, well,
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Speaker 3: if we do this biop scene and it comes back
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Speaker 3: that there's nothing wrong with him, we're going to press
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Speaker 3: charges against your wife for child abuse in munch Housing syndrome.
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Speaker 3: And we're twenty eight years old, right, like yet I
5:50
Speaker 3: had already had a child, but still twenty eight years old.
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Speaker 3: And so my husband and never and he has these
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Speaker 3: two doctors, he's not even in a room with me,
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Speaker 3: can't consult with me, and has to make an on
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Speaker 3: the spot decision if he trusts me enough to move
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Speaker 3: forward with this biopsy that scheduled in thirty minutes. And luckily, obviously,
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Speaker 3: my husband was like, go, like, do the biopsy, like
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Speaker 3: I trust my wife completely, and then he came in.
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Speaker 3: So I didn't even know that that was a topic
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Speaker 3: until Benjamin was already in surgery for his biopsy, and
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Speaker 3: he explained it to me, and he's like, listen, like,
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Speaker 3: here's what's gonna happen. If nothing's wrong with him, fine,
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Speaker 3: they get the done with the biopsy. Obviously they have
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Speaker 3: to send it off to the labs for results, so
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Speaker 3: they let us go home. Within twenty four hours, I
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Speaker 3: get a phone call and the phone call goes, Miss Perry,
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Speaker 3: this is so and so from such and such hospital.
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Speaker 3: Can you bring your son to the emergency room. He
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Speaker 3: actually has a disease that could kill him. Excuse me
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Speaker 3: time out. Yesterday you guys wanted to press charges against me,
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Speaker 3: and today my son has to get to an emergency
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Speaker 3: room because he could die. And that's exactly how the
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Speaker 3: phone call. But I was sitting at a park with
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Speaker 3: the twins and a friend and I literally just dropped
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Speaker 3: everything packed up. The twins called my husband and said,
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Speaker 3: I'm on my way to the hospital right now. Benjamin
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Speaker 3: has to have emergency surgery. They said he could die.
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Speaker 3: And that was all the information.
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Speaker 4: I had.
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Speaker 3: Knew nothing about the word heirs sprung, nothing. I just
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Speaker 3: am driving as fast as I can to a hospital.
7:22
Speaker 3: So get to the hospital and they're like, we're going
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Speaker 3: to take Benjamin in We're going to do what's called
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Speaker 3: anal rectel pulled through, and they are speaking to me
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Speaker 3: in all this hospital jargon that I am not aware of,
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Speaker 3: and I'm just dumbfounded. And so Benjamin goes back in
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Speaker 3: for surgery and this all is transpiring, which we talked
7:45
Speaker 3: a little bit off air. Yesterday was his ten year
7:47
Speaker 3: anniversary since this very specific surgery we're discussing. So my
7:52
Speaker 3: husband and I are pacing the waiting room. They said
7:55
Speaker 3: it could be anywhere from two to six hour surgery.
7:58
Speaker 3: They didn't know how long it was going to take.
8:00
Speaker 3: Said they had to go in and explore because they
8:02
Speaker 3: weren't sure. And again, all I knew was the word hirshprungs,
8:06
Speaker 3: and that was it. I knew no other details. So
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Speaker 3: Benjamin's in surgery and I decided to start researching. You know,
8:12
Speaker 3: I'm researching what can I find out about hirshprungs, And
8:14
Speaker 3: I'm googling, which, again, not the greatest thing to do
8:17
Speaker 3: while your child's in surgery is to hit the Google
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Speaker 3: search engine. Benjamin gets out of surgery, he goes up
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Speaker 3: and he has a stoma. Because they were they were
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Speaker 3: going to I guess what they were going to do was,
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Speaker 3: you know, cut the intestine, let it heal, and then
8:36
Speaker 3: go back in and reattach later after he had some
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Speaker 3: time to heal. Right, So he has his colostomy. He's
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Speaker 3: in the hospital and within the first twenty four hours
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Speaker 3: I start looking at his small intestine which is in
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Speaker 3: his colostomy, and I'm like, man, it's turning colors, like
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Speaker 3: it's getting really dark. Well, the nurses everybody's like, it's fine,
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Speaker 3: it's fine. This is how they normally look. You're fine,
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Speaker 3: you're good. And I'm like, guys, I'm really like, it's not.
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Speaker 3: We had this one nurse I'll never forget. Her name
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Speaker 3: was Calypso I thought it was the most interesting name.
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Speaker 3: But I will never forget her because I looked at
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Speaker 3: her and I said, something is wrong again, and she
9:18
Speaker 3: looked at it and she goes, you're right. Well. Needless
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Speaker 3: to say, they caught it too late, and Benjamin had
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Speaker 3: to go in for a second emergency surgery because they
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Speaker 3: had killed off part of his healthy small intestine with that,
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Speaker 3: So back in with the colostomy bag, which for a
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Speaker 3: two year old was the most challenging thing we've ever
9:40
Speaker 3: dealt with. It was really hard being a twin wanting
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Speaker 3: to be as active as your brother and dad's pop
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Speaker 3: literally all the time, I mean, for any reason under
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Speaker 3: the sun, just because they're there, they pop. And so
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Speaker 3: we really we had an in home nurse that would
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Speaker 3: come twice a week and help me change out like
10:00
Speaker 3: his bandages and all his stuff and whatnot. And so
10:04
Speaker 3: by October, so this happened in August. By October, they
10:07
Speaker 3: were ready to reattach. So they, you know, we go
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Speaker 3: back into the hospital, we go in for a reattachment,
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Speaker 3: and they're like, okay, you know, wait a couple of
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Speaker 3: months and he should start stooling and everything should be great. Okay,
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Speaker 3: that was it. So we go home and you know,
10:23
Speaker 3: we're doing irrigations and we're doing all the things that
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Speaker 3: we're supposed to be doing at this point, and Benjamin's
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Speaker 3: still not stooling, like well, still not the greatest. And
10:34
Speaker 3: then on the days that it was stool it was
10:37
Speaker 3: fifteen to twenty diapers in a day. I mean, we couldn't.
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Speaker 3: It was just draining out of him. And I'm like, okay,
10:43
Speaker 3: so long story short, we just have to We just
10:46
Speaker 3: kept going back, Like I felt like I was a
10:48
Speaker 3: frequent flyer, but I'm like, there is still this isn't
10:50
Speaker 3: the right thing. So then we decided to change hospitals
10:53
Speaker 3: and doctors all together. So change doctors, change hospitals. Well
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Speaker 3: the new plan, and let's give him the costumele and
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Speaker 3: let's see if we can do flushes from the outside
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Speaker 3: ind and kind of help him regulate that. So that
11:10
Speaker 3: was like the next plan. Simultaneously, as we're meeting this
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Speaker 3: new doctor, we're getting ready to have as the costume
11:18
Speaker 3: placed on him. I find reach like through internet searches
11:23
Speaker 3: now that I'm in a better place to be searching
11:26
Speaker 3: on the internet and know what I'm more specifically looking for,
11:30
Speaker 3: and I I just reached out, like I reached out
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Speaker 3: to their like question page and I get a call
11:37
Speaker 3: from Liz Crawford and Kate and my life changed after
11:43
Speaker 3: speaking with Kate and Liz, So a one hour phone
11:46
Speaker 3: call turned into hey can you come to and meet,
11:50
Speaker 3: you know, phone meeting with the rest of the board,
11:54
Speaker 3: and from there it kind of just spiraled right, and
11:58
Speaker 3: I just found such an amazing community within reach. So
12:03
Speaker 3: from about the time Benjamin was four to about six
12:07
Speaker 3: or seven, we just had annual Secostomey replacement surgeries, which,
12:13
Speaker 3: come to find out, they could have stayed in a
12:14
Speaker 3: lot longer than one year, but the surgeon wanted to
12:17
Speaker 3: replace it every single year. So Benjamin kind of went
12:19
Speaker 3: through all these surgeries. But being on the board, I
12:23
Speaker 3: never wanted to I don't know the right way to
12:26
Speaker 3: word it. I never wanted to assume that because I
12:29
Speaker 3: was on the board, I could just get access to
12:33
Speaker 3: all these amazing doctors that are on the board, right,
12:35
Speaker 3: Like I didn't want to assume like because I'm on
12:37
Speaker 3: the board, you guys should or need to help me.
12:40
Speaker 3: So I kind of just always would ask little questions
12:43
Speaker 3: here or there. But Liz was just such.
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Speaker 5: A a advocate and a help and we had gone
12:51
Speaker 5: to different go ahead, We had gone to different events,
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Speaker 5: like I was going to their annual symposiums with them and.
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Speaker 3: We were in and we were sitting in a car
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Speaker 3: talking and Liz goes, you know what, we need to
13:04
Speaker 3: bring this up, Like we need to bring this up,
13:06
Speaker 3: you know, at dinner later and you know, maybe just
13:08
Speaker 3: pick the brains of the surgeons on the board. So
13:11
Speaker 3: we do. We have a conversation and doctor Alan Goldstein,
13:15
Speaker 3: who is one of our board members was like, Hey,
13:18
Speaker 3: if your insurance takes it and you feel comfortable, why
13:21
Speaker 3: don't you and Benjamin come out to Boston and Boston
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Speaker 3: Mouse General and we'll just run some tests. Well, let
13:27
Speaker 3: me just run some tests, So get home and you know,
13:31
Speaker 3: get everything organized at the insurance and Benjamin Nifel out
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Speaker 3: to Boston about twenty seventeen and trying to get my
13:39
Speaker 3: time timeline correct here and at that time we did,
13:44
Speaker 3: you know, we did another biopsy. We did. I never
13:47
Speaker 3: want to use the medical terms because I never pronounced
13:50
Speaker 3: them right. But it's the balloon test, anal rectal mammo.
13:55
Speaker 3: I can't even say, I'm not gonna try, but they
13:57
Speaker 3: basically put a balloon in and insert it to see
14:00
Speaker 3: how much sensation you are feeling. Of all the tests
14:04
Speaker 3: that Benjamin underwent, that was by far the hardest that
14:07
Speaker 3: we have ever endured. Obviously he was awake for it
14:11
Speaker 3: as we get through all these tests, and what doctor
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Speaker 3: Goldstein had found was literally a millimeters. Had they gone
14:19
Speaker 3: up millimeters more when they did the initial pull through,
14:22
Speaker 3: they would have taken out all the dead They ginglion
14:27
Speaker 3: excels and then a little bit further to help. So
14:31
Speaker 3: that new cells could regenerate, but they didn't, so it
14:35
Speaker 3: just died again. Right, So doctor Goldstein's recommendation was, let
14:39
Speaker 3: me do a secondary anal Wretchel pull through. Let's, you know,
14:44
Speaker 3: give Benjamin this time. Let's get this all planned out.
14:47
Speaker 3: It took about a year, so December of twenty eighteen,
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Speaker 3: Benjamin and I flew back out to Boston and on
14:54
Speaker 3: his dad's birthday, December eighteenth, we had his secondary pull
14:58
Speaker 3: through and it was a life changer, right, game changer.
15:05
Speaker 3: So we get through that secondary pull through, and I
15:09
Speaker 3: of course I had the REACH board support. I still
15:12
Speaker 3: have videos of Liz and all the board members just
15:14
Speaker 3: calling Benjamin and wishing him luck, and everybody just circling
15:17
Speaker 3: us with love. And our founder Eric lives out there,
15:22
Speaker 3: so he visited Benjamin and I in the hospital like everybody,
15:25
Speaker 3: like it was such it was really just divine intervention, right,
15:29
Speaker 3: like life just worked out exactly how it was supposed
15:31
Speaker 3: to do, because these incredible people that I met through Reach
15:34
Speaker 3: are all supporting this, this you know, very scary process.
15:40
Speaker 3: And we had the secondary pull through. We made it
15:43
Speaker 3: home days literally two days before Christmas, and we just
15:48
Speaker 3: didn't know how it was going to go from there, right,
15:49
Speaker 3: so we still hat this it cost to me button.
15:51
Speaker 3: We were going to keep that in place as a
15:53
Speaker 3: secondary measure just to kind of see but so that
15:56
Speaker 3: we always had a way to flush him if there
15:59
Speaker 3: was ever an issue COVID. We're fast forwarding. So that
16:05
Speaker 3: was at the very end of twenty eighteen. So now
16:07
Speaker 3: twenty nineteen kind of status quo. You know, we were
16:10
Speaker 3: still doing the secostume button, but instead of doing it daily,
16:14
Speaker 3: we were now doing it like every few days, just
16:17
Speaker 3: to help keep them regular. And then COVID hit right
16:22
Speaker 3: and the world kind of shut down. And while COVID
16:26
Speaker 3: was so devastating and so awful, it did wonders for
16:31
Speaker 3: a child with her sprungs that really needed to focus
16:34
Speaker 3: on stooling. And we spent the first four months of
16:39
Speaker 3: COVID figuring out how to regulate and time Benjamin stools
16:44
Speaker 3: with the laxative. And so he would take a laxative
16:49
Speaker 3: and we would trial and error. Let's try in the morning,
16:52
Speaker 3: when does it make in stool. Let's try it this time,
16:54
Speaker 3: when does it make in stool. We did this for
16:56
Speaker 3: a while, and by June of twenty twenty, we felt
17:00
Speaker 3: comfortable enough to remove Benjamin's to costome and let him
17:03
Speaker 3: attempt to stool with just a laxative daily laxative on
17:07
Speaker 3: his own, and he learned that when he felt like
17:16
Speaker 3: he needed to throw up, that wasn't really he needed
17:18
Speaker 3: to throw up. That means, oh, I need to go
17:19
Speaker 3: to the bathroom. Benjamin's not really a kid that when
17:23
Speaker 3: he gets sick, he ever really does throw up. So
17:25
Speaker 3: that was kind of his indicator, and that was, you know,
17:29
Speaker 3: seven eight years old. Now at eleven, he's able to say,
17:32
Speaker 3: if I want to eat that pancake, I know in
17:36
Speaker 3: fifteen twenty minutes, I'm going to need a bathroom. Right,
17:40
Speaker 3: But COVID really really helped us time and regulate and
17:44
Speaker 3: get a sense of body for Benjamin, and that was pivotal, crucial.
17:51
Speaker 4: Right.
17:53
Speaker 3: But since then, I will say, for those looking for hope,
17:57
Speaker 3: Benjamin is in the best place in his life he
18:01
Speaker 3: has ever been. With her Sprungs. Some days we forget
18:04
Speaker 3: we even have her Sprungs, to be honest, minus the
18:07
Speaker 3: daily laxative that we take. So it's it's it was
18:13
Speaker 3: a blur. It was a lot of exhaustion and just
18:17
Speaker 3: terrifying nights and days But after a lot of just
18:21
Speaker 3: trusting my gut and my instinct, trusting my doctors, trusting
18:25
Speaker 3: my support system, Benjamin's in a really good place. And
18:29
Speaker 3: he in fact is here obviously like you mentioned, to advocate,
18:32
Speaker 3: and he does. He goes to the REACH symposiums with us.
18:35
Speaker 3: He advocates, He loves to talk to other children. He
18:38
Speaker 3: is so proud to have her sprungs and and I
18:43
Speaker 3: know that sounds interesting, right, But when we got that
18:47
Speaker 3: diagnosis at TOO, I looked at him and I said,
18:50
Speaker 3: you know what, if he was an amputee, if he
18:53
Speaker 3: had cancer, if he had any number of issues, we
18:58
Speaker 3: would never let it hear him from being authentically who
19:02
Speaker 3: he is or doing anything he wants to do. So,
19:06
Speaker 3: as we mentioned a little bit before hopping on, Benjamin
19:10
Speaker 3: played football, I mean American football, but he played football nonetheless,
19:14
Speaker 3: and we ecepandaged his stomach with two or three ACE
19:17
Speaker 3: bandages to cover this ecostome so that no matter what
19:20
Speaker 3: happened with this, and it was flag football, right because
19:22
Speaker 3: I'm a mom and I got to make sure he's
19:24
Speaker 3: not gonna get tackled when he has it's the cots
19:26
Speaker 3: to be button. But nonetheless, we let him participate in
19:30
Speaker 3: everything in life that he wanted to, and we never
19:32
Speaker 3: let hers Sprungs deter him. We made it his superpower.
19:36
Speaker 3: I mean, as you see on the Reach website if
19:38
Speaker 3: you go to the stories, he's Batman. I mean, it
19:41
Speaker 3: was his superpower. Hirshprungs has made Benjamin be able to
19:46
Speaker 3: talk publicly and speak publicly. He's currently just finished writing
19:50
Speaker 3: the next piece for the newsletter for Reach. But Benjamin
19:54
Speaker 3: loves to advocate, so I'm gonna let him jump in
19:58
Speaker 3: really quick because I've been kind of giving you the story,
20:01
Speaker 3: but I'm gonna let him jump in and speak directly
20:03
Speaker 3: to having her sprung Yeah.
20:05
Speaker 2: Absolutely. I'll just ask a quick question to you, Ben
20:08
Speaker 2: If I met the piece of writing you've done for
20:13
Speaker 2: the newsletter, what's it about?
20:16
Speaker 4: It's about my story in your camp and my camp
20:21
Speaker 4: I did?
20:22
Speaker 2: What was that about?
20:25
Speaker 4: I did this Hersprun's camp, and.
20:29
Speaker 3: Well, it's a g I camp and Thomas called we.
20:34
Speaker 4: It's called round Up River Ranch and we did a
20:36
Speaker 4: lot of cool things like fishing, zip whining, canoeing, and
20:42
Speaker 4: horseback riding.
20:45
Speaker 2: Everything everything that's fantastic.
20:49
Speaker 3: There's an American actor named Paul Newman. That had created
20:53
Speaker 3: a camp here in Colorado in Gypsum for sick kids, right,
20:58
Speaker 3: and so each week is done a catered to either
21:01
Speaker 3: gashal and intestinal heart disease, all these different things, and
21:04
Speaker 3: you have to apply to get in. It's run solely
21:06
Speaker 3: by doctors, nurses, and volunteers, which most of them are
21:09
Speaker 3: in their residency program or nursing program. And it's just
21:14
Speaker 3: a safe haven for kids to go that all have
21:17
Speaker 3: like like illnesses, but that want to do exactly what
21:22
Speaker 3: other kids their age are doing. And it is It
21:25
Speaker 3: was the first year he got to go in person,
21:27
Speaker 3: and he's been you know, he's gone every year virtually
21:29
Speaker 3: because you can't start till year seven, which happened to
21:32
Speaker 3: be COVID. But it is amazing for families. He met
21:37
Speaker 3: kids from all over the country. You can fly in
21:39
Speaker 3: from any state anywhere. You just have to apply to
21:43
Speaker 3: go to this camp and it was a game changer.
21:46
Speaker 3: Benjamin will be back every year until he's seventeen, and
21:49
Speaker 3: then he hopes to volunteer.
21:51
Speaker 2: So that's fantastic. And again I'll just pick up on
21:55
Speaker 2: that point and with you, Benjamin, because you'll someone who
22:01
Speaker 2: sort of typifies what this podcast is about. One of
22:05
Speaker 2: the reasons I started doing this podcast is because I
22:07
Speaker 2: want to show people that there are people with hirshprungs
22:11
Speaker 2: out there who don't let things get in their way.
22:15
Speaker 2: They go and do you know, as you mentioned the
22:18
Speaker 2: football and the horse riding and the etcetera, etcetera. And
22:21
Speaker 2: I'd love to touch off on sports if I may,
22:24
Speaker 2: because that's by sort of specialty and it's what I
22:26
Speaker 2: do for a lific herman have done for the best
22:30
Speaker 2: part of fifteen years or so. But with your I'll
22:35
Speaker 2: call it American football. Sorry about that. I know you
22:38
Speaker 2: call it football. I'll call it American football. Do you
22:41
Speaker 2: have a particular.
22:42
Speaker 3: Position that you play in a ride receiver, usually.
22:47
Speaker 2: Runner, then bit quick runner.
22:51
Speaker 3: And what other sports do you play that I have
22:53
Speaker 3: played baseball whole night.
22:57
Speaker 4: I usually play second base.
23:00
Speaker 3: And host bungs. Does it stop me?
23:06
Speaker 4: It's just if I run so much, I have to
23:09
Speaker 4: go to the bathroom.
23:11
Speaker 2: Yeah, yeah, that's fair enough.
23:13
Speaker 3: That's fair enough.
23:14
Speaker 2: Oh so good to hear it though, that you you
23:17
Speaker 2: take part in all kinds of different things and it
23:21
Speaker 2: just doesn't let you stop you. It doesn't stand in
23:24
Speaker 2: your way at all. And that's absolutely fantastic, have you.
23:27
Speaker 2: I know, I was reading your story and I know
23:30
Speaker 2: I know it sort of goes up to when you're
23:33
Speaker 2: the age of five, and at the bottom bit it
23:35
Speaker 2: says that you you want to become a doctor and
23:38
Speaker 2: help people. Do you still want to go into that field?
23:41
Speaker 2: Do you want to do something else?
23:43
Speaker 3: Run I've been thinking about that.
23:47
Speaker 2: I mean, you're only eleven, it doesn't you know, it
23:49
Speaker 2: doesn't matter, You've got loads of time.
23:53
Speaker 3: I might be adopted.
23:54
Speaker 4: But I was thinking about like a sports player.
23:58
Speaker 2: It's a good career. It's a good career.
24:00
Speaker 3: Dodor's a backup plan to being like a pro at.
24:05
Speaker 2: Yeah. Absolutely, Oh that's fantastic.
24:08
Speaker 3: No.
24:08
Speaker 2: I mean, obviously with my sporting background, it was what
24:11
Speaker 2: I wanted to do as well, so it was yeah,
24:14
Speaker 2: now going to sports is fantastic. Once do you work
24:18
Speaker 2: with mainly cricket. So my my actual job, apart from
24:24
Speaker 2: doing this podcast and doing radio as well as I'm
24:27
Speaker 2: a cricket development officer and so I work with countries
24:29
Speaker 2: all over the world increasing their participation in cricket in
24:35
Speaker 2: I think six different countries I work with at the moment.
24:37
Speaker 2: So yeah, it's good fun, good fun. It's good, good
24:41
Speaker 2: to And then before that I did teaching and coaching
24:43
Speaker 2: and playing and all sorts. So but yeah, no, it's
24:46
Speaker 2: it's great. But enough about me. We'll stick to the
24:51
Speaker 2: task and add And there's a couple of questions I
24:55
Speaker 2: have for you. And you mentioned the word secostomy. Not
25:00
Speaker 2: I've heard too much obviously, I've heard iliostomy and various others.
25:05
Speaker 2: Could you just explain just briefly what a secostomy is.
25:08
Speaker 3: Yeah, so I literally just called it his button. But
25:12
Speaker 3: it essentially was like a little pocket door on his
25:15
Speaker 3: stomach that would open up to a bole and we
25:18
Speaker 3: would stick an ivy like a drip in it and
25:24
Speaker 3: we would just flush him from the outside and I
25:26
Speaker 3: we would just tell it, you know, and and it's
25:28
Speaker 3: really cute. I actually his brother used to sit with
25:31
Speaker 3: him because sometimes it would be a process, right because
25:33
Speaker 3: we would do like five hundred CC's of a little
25:36
Speaker 3: solution of like saline with a little bit of me
25:39
Speaker 3: relax in it, and he would have to sit on
25:43
Speaker 3: the on the loop forever, right like forever. Since I'm like,
25:47
Speaker 3: so he was definitely an iPad kid, because what else
25:50
Speaker 3: do you do when you're just sitting there? But his brother.
25:53
Speaker 3: We have some precious photos of like his brother would
25:55
Speaker 3: sit in there and like hold his hand for support.
25:57
Speaker 3: But at about the age of six, Benjamin knew how
26:00
Speaker 3: to handle and fill his bag, dump the right amount
26:03
Speaker 3: of mirror, actin, hang it up, did own put it.
26:07
Speaker 3: He did it all on his own. I mean I
26:09
Speaker 3: did it when he was little, but he really took
26:12
Speaker 3: initiative and did it all on his own.
26:14
Speaker 2: That's brilliant. Oh well done you and I love you.
26:17
Speaker 2: Mentioned the iPad there, And I love talking to people
26:22
Speaker 2: who are about sort of because I think you're about
26:25
Speaker 2: twenty years younger than I am, Benjamin. So when I
26:28
Speaker 2: went through it, iPads weren't around, so so where and
26:35
Speaker 2: obviously Google and everything, and certainly smartphones weren't around, so
26:38
Speaker 2: my mom didn't have that sort of like look up
26:41
Speaker 2: Google and this that the other. So I always find
26:44
Speaker 2: it interesting talking to people and see how much you
26:47
Speaker 2: know things have progressed, and see when I had to
26:50
Speaker 2: do all that stuff as well, there was no iPad
26:54
Speaker 2: to watch. Unfortunately, that would be a bummer. Yeah, yeah,
26:59
Speaker 2: I don't know how I got through it, but yeah, so,
27:03
Speaker 2: but no, thank you very much for that for that
27:05
Speaker 2: explanation because it's not a word that I've necessarily heard before,
27:11
Speaker 2: and one of the other You are a twin, obviously,
27:14
Speaker 2: as you mentioned, was there sort of a reason given
27:18
Speaker 2: as to why one twin has hirsprungs and why one
27:20
Speaker 2: twin doesn't have hirsprungs.
27:22
Speaker 3: No, unfortunately there was no. I mean, initially I thought
27:25
Speaker 3: it was premature, you know, just premature birth. Benjamin was
27:29
Speaker 3: in flux, which basically just meant he was kind of
27:32
Speaker 3: stuck in utero the whole time, so he didn't really
27:34
Speaker 3: do a lot of moving baby b which as Bentley
27:38
Speaker 3: grew in my hip. Basically, I don't know if that
27:41
Speaker 3: kind of was it. They had me on several different medications.
27:44
Speaker 3: I don't know. I sometimes speculate that that could potentially
27:48
Speaker 3: have been a reason because some of the medications looking back,
27:51
Speaker 3: I probably shouldn't have been on during pregnancy. So no,
27:54
Speaker 3: I don't think there's a maybe just the luck of
27:57
Speaker 3: the draw, I don't know. Yeah, you want to say.
27:59
Speaker 4: Weird that he doesn't average sprungs because I was born first.
28:05
Speaker 2: Hell, yeah, it always fascinates me. One of those things
28:09
Speaker 2: because I'm as I mentioned a couple of times, I'm
28:12
Speaker 2: one of four boys, and I'm the only one with hersprungs.
28:16
Speaker 2: So it always fascinates me as to why did I
28:18
Speaker 2: get it and why did my brothers not I. Nobody's
28:23
Speaker 2: ever given me a huntser, and it seems like twenty
28:25
Speaker 2: years on, there's still no answer out there.
28:29
Speaker 3: My husband and I like to say that Benjamin got
28:32
Speaker 3: her sprungs because of the two. Bedley is the worst
28:36
Speaker 3: sick kid ever, Like he cries and is whiny and
28:39
Speaker 3: just super aggressive with being thick. So we're like, well,
28:42
Speaker 3: if anybody had to get her sprugs, it would be
28:44
Speaker 3: the one that could tolerate it.
28:45
Speaker 2: Yeah, got with it.
28:50
Speaker 3: Like a cheap Oh.
28:51
Speaker 2: That's fantastic. That's so good to hear. And just apart
28:55
Speaker 2: from sports as well, Benja, do you have any other
28:57
Speaker 2: hobbies that you do as well?
28:59
Speaker 3: I'm video game, well, video games of course, drawing at school?
29:08
Speaker 2: You like school? Nice, that's good to hear. That's always
29:11
Speaker 2: good to hear. That's a fantastic favorite.
29:13
Speaker 3: Just started middle school, so that's fantastic.
29:17
Speaker 2: No, that's and middle school.
29:20
Speaker 3: It's eleven, yeah, sixth, seventh and eighth grade.
29:24
Speaker 2: Here I try to do the English conversion in my head.
29:29
Speaker 2: From from when we add middle schools, I don't think
29:31
Speaker 2: we have middle school We used to have middle schools
29:33
Speaker 2: over here, but now that's all sort of changed and everything.
29:37
Speaker 2: But favorite video game MBIL six Siege great, but I
29:43
Speaker 2: have no idea all of.
29:44
Speaker 3: This, some video game where him and his spreads. I'll
29:47
Speaker 3: have to talk and fight.
29:49
Speaker 2: So fantastic. That great, great, great to hear, and thanks
29:54
Speaker 2: him for for for sharing your story as well, and
29:57
Speaker 2: I know it's it's on the REACH website pretty the
30:00
Speaker 2: sort said an in depth look as well. And I
30:03
Speaker 2: always like people meeting people who've had more surgeries than
30:06
Speaker 2: I have. I always find that fascinating. You're up to
30:09
Speaker 2: I think twelve surgeries, I think, is that right?
30:12
Speaker 3: I think in total, when we've counted them all up,
30:15
Speaker 3: I believe we're about fifteen.
30:17
Speaker 2: Wow. I think it's foe give.
30:19
Speaker 3: Or take one, fourteen or fifteen. But sometimes I get
30:23
Speaker 3: PTSD thinking back to off.
30:26
Speaker 4: Yeah.
30:26
Speaker 3: I try not to count, and I try not to
30:28
Speaker 3: go through the medical file unless it's apps.
30:32
Speaker 2: Just just best to best to push on. And I'd
30:36
Speaker 2: like to bring it round to REACH as well, because
30:38
Speaker 2: obviously that's sort of one way we connected as we're
30:42
Speaker 2: sort of both in different ways. You on the board. Me,
30:47
Speaker 2: I think I'm the only ambassador. I think I was
30:49
Speaker 2: the only one who applied to be to REACH the
30:53
Speaker 2: ambassador or an ambassador for Reach. And he said you
30:57
Speaker 2: got involved sort of.
31:00
Speaker 3: Round.
31:00
Speaker 2: So spring twenty eighteen, you take, Yeah, I.
31:03
Speaker 3: Give her take a little bit, you know. So I've
31:05
Speaker 3: been involved since then. Let's see, We've had went to
31:10
Speaker 3: a Nebraska symposium, Sacramento symposium, we just did Saint Louis,
31:14
Speaker 3: and we had a virtual one. So yeah, I would
31:15
Speaker 3: say about twenty eighteen, it has been. It's been amazing.
31:19
Speaker 3: The last year's been rough. We've had a lot of transitions.
31:22
Speaker 3: We've just moved back to Colorado from Texas. Not a
31:26
Speaker 3: lot of uh where we were at hospitals that could
31:31
Speaker 3: really benefit if Benjamin ever needed one with that kind
31:36
Speaker 3: of thing. So we kind of came back home where
31:37
Speaker 3: we feel a little bit better. But no, Reach has
31:40
Speaker 3: been such a pivotal point lasting friendships, right, Like Liz
31:48
Speaker 3: is a powerhouse of a woman. I know you've had
31:50
Speaker 3: her on twice two episodes. I listened to both of both,
31:53
Speaker 3: and Liz is just so inspiring and she's just so
31:59
Speaker 3: amaz I just my family adorsed her. In fact, my
32:02
Speaker 3: daughter stays with her six months out of the year.
32:05
Speaker 3: Essentially she goes up and does some stuff and hangs
32:08
Speaker 3: out and sees Liz and does some interning. But Liz
32:11
Speaker 3: is just such an incredible advocate for her spruings and
32:14
Speaker 3: she really is so knowledgeable and so well educated on
32:17
Speaker 3: it just being a mom, right, and she really taught
32:22
Speaker 3: me how to use my voice right. And then having
32:25
Speaker 3: Eric and Isabelle and Jack and Alan on the board,
32:28
Speaker 3: I mean, everybody is just so supportive and it really
32:32
Speaker 3: is such an incredible what Reach is doing is so incredible.
32:36
Speaker 3: Like I know, we just had our book that just
32:38
Speaker 3: came out, Like my Eric wrote that book and Isabelle
32:42
Speaker 3: illustrated that book. My brother has her sprung just so
32:47
Speaker 3: many people and we do. We like to talk about hers,
32:50
Speaker 3: so we tell everybody. I went to the nurse. Actually
32:52
Speaker 3: when I introduced myself, I always, you know, have to
32:54
Speaker 3: introduce everybody at school, and I said, please visit RECHHD
32:58
Speaker 3: dot org and I like, do this whole and they're
33:00
Speaker 3: just like, but that's how I introduce. I don't even
33:03
Speaker 3: really explain hershbrums very much to anybody. I say I
33:05
Speaker 3: would like you to go to our Reach website. Please
33:07
Speaker 3: visit the about us, please visit this page, and I
33:10
Speaker 3: kind of that's how I present Reach just to that
33:13
Speaker 3: way people are visiting the website and sing. There's just
33:16
Speaker 3: so much that the website and Reach has to offer
33:19
Speaker 3: for families that's fantastic.
33:21
Speaker 2: And I know you've been you mentioned it during your
33:25
Speaker 2: story and just now about how how important Reach were
33:29
Speaker 2: to you and your family. But what about the other
33:32
Speaker 2: way around, Because we'll see you are part of the
33:34
Speaker 2: Reach board. You're in charge of your community outreach and fundraising,
33:39
Speaker 2: So what do you do to help them?
33:42
Speaker 3: So I so we have done several different big things.
33:46
Speaker 3: We try to do fundraising events locally and then obviously
33:51
Speaker 3: we reach out to anybody who we have different you know,
33:54
Speaker 3: moms generally the email and want to get into fundraising,
33:57
Speaker 3: so kind of give them an overview of different idea
34:00
Speaker 3: is that we've tried. But Benjamin actually Kendra Scott is
34:03
Speaker 3: a great company to do philanthropy before they actually let
34:07
Speaker 3: Benjamin come in and design a Reach specific necklace that
34:12
Speaker 3: we have sold on our website. At one point we
34:15
Speaker 3: sold it during a couple of symposiums. So we do reach.
34:19
Speaker 3: There's a great wine company out here that'll do fundraising
34:22
Speaker 3: for wine parties. So I've you know, done a couple
34:25
Speaker 3: of those where if you really just go into your
34:28
Speaker 3: community and you know, talk about, Hey, I've done it
34:31
Speaker 3: at clothing stores, small boutiques, big boutique like I said,
34:35
Speaker 3: Kendrick Scott's in the United States is a very big name,
34:40
Speaker 3: and you know, all these people are willing to participate.
34:43
Speaker 3: And so I just go in and I say, you know,
34:45
Speaker 3: here's a REACH flyer, would you let us hold a
34:47
Speaker 3: fundraiser and in honor of you know, Hirsch Bronze and awareness.
34:51
Speaker 3: And we've done it at malls, We've done it, I
34:55
Speaker 3: mean literally everywhere. We've done it, at boutiques, like I said,
34:58
Speaker 3: school fundraisers, we've done it kind of anywhere we can
35:02
Speaker 3: get to word out.
35:04
Speaker 2: And it's the first question, presumably what is Hirshprungs?
35:09
Speaker 3: And yeah, no, that's exactly where everybody wants so well,
35:12
Speaker 3: first they want to know how do we pronounce it?
35:14
Speaker 3: That's usually what we get. How do you say that?
35:18
Speaker 3: I'm like, hush sprungs, Like we go through the whole thing. Yeah, No,
35:23
Speaker 3: it's it's really great to educate people, right, and then
35:25
Speaker 3: just getting getting the word out because I feel like
35:28
Speaker 3: a lot of people, you know, it's it's hard to
35:33
Speaker 3: talk about it's it's a poopy disease, right, Nobody wants
35:36
Speaker 3: to talk about something. You know, you don't talk about
35:38
Speaker 3: passing gas in public, you don't talk, you don't talk
35:41
Speaker 3: about certain things just socially. But I think that you know,
35:46
Speaker 3: bringing attention to it, talking about it. Having a place
35:48
Speaker 3: like Reach where you you know, can go and find
35:52
Speaker 3: like minded individuals or people that are going through the
35:54
Speaker 3: same thing, it makes it a lot easier to fluidly
35:57
Speaker 3: talk about. So now we talk about poop all the time.
36:01
Speaker 2: Fantastic. Yeah, No, I seem to now spend every week
36:05
Speaker 2: talking about it home there lasts.
36:06
Speaker 3: So I never thought in my life this is what
36:09
Speaker 3: I had spent the majority.
36:10
Speaker 2: Of my time time, No vedea videta. It's it's funny
36:14
Speaker 2: how life, life takes its turns. So I'd love to
36:18
Speaker 2: also bring up that you sit on the Skyridge Hospital's
36:23
Speaker 2: pediatric board as well.
36:26
Speaker 3: Uh so I did, Yeah, I did. I longer. When
36:29
Speaker 3: we moved away from Texas, I had to relinquish my seat,
36:33
Speaker 3: but I was on the pediatric Advisory Board, and a
36:35
Speaker 3: lot of that happened. It was it was a crummy
36:38
Speaker 3: situation that turned into a great situation. Benjamin at the
36:43
Speaker 3: time had a colost to me and he uh, his
36:48
Speaker 3: intestines protruded, and I rushed into the emergency room and
36:52
Speaker 3: the doctor was like, what what's her sprung And the
36:56
Speaker 3: nurse kindly grabbed her, locked her out of the room,
36:59
Speaker 3: came and said we'll be right back with you. And
37:02
Speaker 3: then I said, please, don't ever have a doctor ask
37:05
Speaker 3: me the lot of her sprungs is again when my
37:07
Speaker 3: child's intestines is hanging out. And then the doctor proceeded
37:11
Speaker 3: to tell me I don't know how to handle this.
37:14
Speaker 3: I'm going to have you drive drive yourself to another
37:18
Speaker 3: hospital where they'll be waiting for you at the er.
37:21
Speaker 3: So a scared mother drove her child who had his
37:25
Speaker 3: intestine truting another twenty mile to another hospital, and I
37:32
Speaker 3: emailed the hospital and I was like, why wasn't I
37:35
Speaker 3: transported by AMBULANCECE what? I had a lot of questions,
37:40
Speaker 3: And I met with like the marketing director of the
37:45
Speaker 3: hospital and she was like, listen, this was obviously a
37:49
Speaker 3: big misunderstanding. You know, whatever I gave them the grace. Right,
37:54
Speaker 3: not everybody understands her sprugs or a lot of doctors
37:58
Speaker 3: at that time. I I do believe now it's actually
38:01
Speaker 3: part of the nursing program. Many of my nursing friends
38:03
Speaker 3: tell me they spend a whole day on Hirshprung which
38:06
Speaker 3: is huge because that used to not be a thing.
38:08
Speaker 3: But now as I have friends going into nursing school,
38:11
Speaker 3: they're like, Oh, we're Hirshprung's day. Guess what. Several different
38:15
Speaker 3: TV shows in the States have touched on Hirshprungs, including
38:18
Speaker 3: The Good Doctor Grey's Anatomy. You have talked about it briefly,
38:23
Speaker 3: but at the time they wasn't a lot. So they
38:27
Speaker 3: you know, apologized and they said, we need to rectify
38:29
Speaker 3: the situation because you know, bad press not great for
38:34
Speaker 3: a hospital. And they did. They were graceful about it,
38:39
Speaker 3: and they said, would you like to sit on our
38:41
Speaker 3: pediatric board and help us from a parent's perspective get
38:46
Speaker 3: to understand what you parents need or looking for expectations are.
38:51
Speaker 3: So I spent five years on that board and it
38:54
Speaker 3: was amazing. It was amazing to be able to add value.
38:59
Speaker 3: Still my favorite hospital on Colorado still the only hospital
39:02
Speaker 3: that we go to in Colorado, and I just think
39:06
Speaker 3: that it was a blessing that they asked me to
39:07
Speaker 3: be a part of that and in it, really, I
39:10
Speaker 3: think both parties we both learned a lot in.
39:12
Speaker 2: That fantastic and I'll just touch on that one part
39:16
Speaker 2: where Hirshbrung's is being mentioned a little bit more. I've
39:19
Speaker 2: had I think about a dozen times somebody has sent
39:23
Speaker 2: the clip of Grey's Anatomy where they are talking about
39:26
Speaker 2: Hirshbrums to me and say, oh, send this to you,
39:30
Speaker 2: and it's fantastic. It's really good, and I think everyone
39:33
Speaker 2: who has sent it to me, but it is now getting, hopefully,
39:38
Speaker 2: by what we do and what REACH does and what
39:41
Speaker 2: lots of other people are doing, hopefully getting the word
39:44
Speaker 2: out there a little bit more about Hirshbrums. I know
39:48
Speaker 2: this just I know you talked about the book with
39:51
Speaker 2: Reach as well, and then my brother has Hirshbrums. There
39:55
Speaker 2: has been a we're recording. The twenty seventh of August,
39:59
Speaker 2: at the weekend was another book released all about Hirshprung's
40:04
Speaker 2: disease by a lady called Jema Kia in the My
40:09
Speaker 2: Abilities Foundation she's written a book all about hirshbrng's disease. Fantastic.
40:15
Speaker 3: Oh I can't wait to catch it. I'm gonna have
40:17
Speaker 3: to grow up.
40:18
Speaker 2: I have ordered it is on its way, so I
40:20
Speaker 2: will I will send it or I will post out
40:24
Speaker 2: on Instagram when I have it and show it as well.
40:27
Speaker 2: So that's it's fantastic that there's so much more is
40:31
Speaker 2: being done about hirshprungs as well.
40:34
Speaker 3: Oh yeah, in ten years. I mean, like I said, whenever,
40:39
Speaker 3: whatever they told me asurs Brunda, I no knowledge of it.
40:43
Speaker 3: And now to know that there are you know, reach
40:47
Speaker 3: and it's being talked about, and there's different programs and
40:50
Speaker 3: it's on you know, TV shows and eventually hopefully movies
40:54
Speaker 3: and anywhere people consume anything just to know about it.
40:58
Speaker 3: It's fluidly as you know about autism or you know,
41:05
Speaker 3: lupis or any of these other things, like I harshprungs is.
41:08
Speaker 3: I mean, I think it's very relevant. We know we
41:11
Speaker 3: know several family with several members in Colorado that have it.
41:15
Speaker 3: We knew several people in Texas that have had it.
41:17
Speaker 3: So you know, it's it's nice because those people can
41:20
Speaker 3: gather and get a sense of community. It's it's really
41:23
Speaker 3: great when you can find people that have walked the
41:25
Speaker 3: same or similar journey as you.
41:27
Speaker 2: Absolute And as we just sort of wind round towards
41:31
Speaker 2: the back end of this, I'd just really like to
41:34
Speaker 2: ask both of you. I'll start with you first, Benjamin,
41:39
Speaker 2: in terms of plans for the future, not just sort
41:43
Speaker 2: of Hirshbrungs wise, but just in general. I know we've
41:47
Speaker 2: talked a little bit about wanting to be a doctor
41:49
Speaker 2: and a sportsman as well, but in terms of sort
41:55
Speaker 2: of talking about Hirshbrungs and writing about Hirshbruns, do you
41:59
Speaker 2: seem doing you doing more of that in the future.
42:03
Speaker 4: Yeah, probably I see me doing. Yeah, I would like
42:07
Speaker 4: to write a bull.
42:10
Speaker 2: That would be excellent, That would be absolutely fantastic. But yeah, no,
42:14
Speaker 2: that's and then dream job what would you like?
42:18
Speaker 3: What's your dream job? You can say anything in the world,
42:22
Speaker 3: but what's your dream job? What sport for? What? What
42:26
Speaker 3: kind of sports? Baseball? You want to be an MLB player?
42:29
Speaker 3: That's with the big money, that right, because there's no caps,
42:32
Speaker 3: So yeah, to be a baseball player too.
42:36
Speaker 2: Go be a baseball player and they'd look after you.
42:38
Speaker 2: But that's that's the thing, that's what you need today,
42:42
Speaker 2: and and it called to you as well in terms
42:44
Speaker 2: of future for reach, future for you what doc.
42:50
Speaker 3: So, now that we're back in Colorado, happy to be back.
42:54
Speaker 3: I really had to take it, like I said, to
42:56
Speaker 3: take a step back in the past year or so.
42:58
Speaker 3: But advocacy and helping people is really where I find
43:04
Speaker 3: my joy in life. I sometimes I think when I
43:08
Speaker 3: grew up, I'd love to be I'd love to be
43:09
Speaker 3: like live where people reach out to me and Liz
43:14
Speaker 3: is just so inspiring, and I just hope to advocate
43:18
Speaker 3: and to be able to be a source of just
43:23
Speaker 3: my personal experience and knowledge to other people. I think
43:26
Speaker 3: for me, just helping anybody in any capacity of life,
43:30
Speaker 3: whether it's with HRS, Sprungs or anything else. I just
43:32
Speaker 3: I really want to get back to my roots of
43:34
Speaker 3: just helping other people, because that's like where I find
43:36
Speaker 3: the most joy.
43:38
Speaker 2: YEP.
43:38
Speaker 3: Corporate corporate jobs are great and I love my job,
43:41
Speaker 3: but I very much miss just straight advocacy work. If
43:45
Speaker 3: I could do that, that would be my dream job.
43:47
Speaker 5: Yeah.
43:48
Speaker 2: Yeah, No, We're definitely along the same lines there with
43:52
Speaker 2: helping people, raising awareness, all of that stuff. And just lastly,
43:57
Speaker 2: where can people find you and keep up to date
43:59
Speaker 2: with you and your story?
44:02
Speaker 3: Oh, Benjamin's like, let me chime in here, So we
44:06
Speaker 3: post about her sprungs on my Instagram page which is
44:09
Speaker 3: just Nicole period Perry period eighteen. That's where they can
44:13
Speaker 3: find me. Find me.
44:16
Speaker 4: I email is Benjamin perrydar levnaticloud dot com.
44:20
Speaker 3: You can email them and he will write back. But
44:23
Speaker 3: he does like all kids, if there are any, Benjamin
44:26
Speaker 3: would love for kids to email him or talk to
44:29
Speaker 3: him about it. He would be a great voice of
44:31
Speaker 3: somebody to just encourage them. So if anybody out there
44:34
Speaker 3: needs a pen pal that has Hirs Sprungs, Benjamin would
44:36
Speaker 3: love to be a pen pal.
44:38
Speaker 2: That's fantastic. That's awesome. I thank you so so much
44:41
Speaker 2: for the chiming in, and hopefully that there are people
44:47
Speaker 2: who listen to this and children who listen to this
44:49
Speaker 2: who will email you and hopefully maybe with some questions
44:53
Speaker 2: or just to say I and whatnot. That's fantastic, and
44:57
Speaker 2: I thank you so so much both of you. Know
44:59
Speaker 2: I mentioned I mentioned while we were off air that
45:03
Speaker 2: I apologize it's taken so long to have both of
45:05
Speaker 2: you on because both of you are absolutely perfect for
45:08
Speaker 2: the podcast with the Hirshprungs and Reach, et cetera. But no,
45:13
Speaker 2: thank you so much for everything. To both of you.
45:17
Speaker 3: We are so grateful you asked us to be on
45:19
Speaker 3: this is This is amazing, so we appreciate what you're doing.
45:22
Speaker 3: This is incredible and I look forward to working with
45:25
Speaker 3: you at a different level with Reach as well.
45:27
Speaker 2: Yes, that'd be fantastic. We'll hopefully have some some news
45:31
Speaker 2: to share in the future, and if we do, then
45:32
Speaker 2: you'll find it on probably both of our Instagram pages
45:36
Speaker 2: and Benjamin might email you as well, so see go.
45:40
Speaker 2: But no, just for me. Thank you so much to
45:43
Speaker 2: both of you for your time and for everything you do.
45:47
Speaker 3: Thank you.
45:51
Speaker 1: Thank you for listening to the podcast. Find us on
45:54
Speaker 1: Instagram Tom's Underscore Hirshbrung's Underscore podcast. Listen to previous episodes
45:59
Speaker 1: on Spotify by searching Tom's Hirsch Runs podcast