Latest / Tom's Hirschsprung's Podcast / Episode 29 - With Stefania Little

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Episode 29 - With Stefania Little · Tom's Hirschsprung's Podcast

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You are listening to Tom's Hirshprun's Podcast, where I provide a look into the
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remarkable experiences of the most inspiring people around Hirshprung's disease and sports. Hello and
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welcome to episode twenty nine of Tom's Hirshprung's Podcast. Now today I am joined
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by somebody very special, somebody who I think I've been after for about four
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months, five months or so. We've been chatting quite a lot sort of
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back and forth over those months and managed to've been very gracious with her time.
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I've managed to get somebody on who is incredibly special, incredibly important to
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the hirshprongs community. So huge, Welcome to Steph Little Welcome, Steph Hi.
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How are you love? Fantastic, fantastic, all the better for having
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you on. It's so kind. There's eventually at the start with somebody who
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very very important in the Hirshbrons community, and we'll talk all about your extraordinary
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story through Hirshbrungs, through your incredible sporting career as well, is something that
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also also struck a chord with me. But I'd like to start, if
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I may just really from the very beginning with you and obviously you were born
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a little bit premature and you would diagnosed straight away, which wasn't something I
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had sort of about two or three weeks or when I was diagnosed. But
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you were diagnosed pretty much. Were I right in saying about there was a
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couple of days give or take or was it on the day? Yeah,
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a couple of dates, Yeah, a couple of days. So diagnosed with
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a couple days was yeah, really really quick. So they sort of found
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it really really early and then had I lost to be fitted about a week
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old? Is that right? Yeah? Yeah? Yeah? So how did
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your your mum find that? Did you display sort of all the classic symptoms
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of having hirshprungs and it was just diagnosed or how a dico? So mom
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fed me within hours of giving birth to me, and I vomited up grain
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bio straightaway, and the nurse that was in the room supporting my mom through
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the breastfeeding was called out and was like, something's wrong, we need help,
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blah blah blah. And then this nurse that was actually supposed to be
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in on a holiday in Africa somewhere came in and she's like, I know
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what's going on. I'm going to call a doctor a Princess Margaret Hospital in
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that was down the road from where I was at the time, and she
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said it was Hershbrung's disease and she had seen it only in boys at the
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time. The doctor rushed over and he was tapping his feet and he goes,
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yep, get her over to Princess Margaret Hospital. We need to do
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surgery straightaway. And that's when they found it. And I was my doctor's
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first female to be diagnosed with it. That's always interesting because doing the research
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and speaking to a lot of people, I haven't calculated exactly, but I
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think I have probably a about fifty to fifty men and women split from people
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who have hirshprungs. But Hirshprungs is three three quarters more likely to appear in
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boys than it is in girls, which isn't so it isn't so much of
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a shot that they hadn't seen a girl with hirshprungs before. So then from
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that part, so you had the colostomy about a week old, did you
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have the pull through at that point as well? Around six months later,
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and that was when you add the coostomy reversal as well. Yes, yep.
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One thing I do want to pick off on because your story I've read
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it from your Facebook page, kicking Hirshprung's disease in the arse. That's something
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I love that. I absolutely love it and if anybody obviously please please follow
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because it's fantastic your story is on there. There's some great positive, positive
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posts on there that we'll get on to later. And the one thing that
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really struck me from the early part of your story was when you were named
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the million dollar Baby. How did you get that name? Because the medical
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stuff all knew me at the time because I didn't really leave the hospital.
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They one nurse was born at one stage, I think, and she started
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calculating how many surgeries I've had and how many procedures and all that, and
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she reckoned it was hitting around the million dollar mark of how many procedures and
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stuff I've had. It was I think all the procedures and all that came
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to like ten in the first year. So yeah, million dollar baby.
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I think there's even an article somewhere in the local hospital newspaper. They even
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put that like afraid of me and that in there, So yeah, million
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dollar baby. Pretty cool. I wish it was in like actual cash though.
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Oh yeah, they just gave me the yeah, yeah, just stuff
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the surgeries. Just maybe I'll take that. Absolutely fantastic. So it obviously
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had many many surgeries sort of so this is all kind of going on before
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a year old. This is within the sort of first six months those ten
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surgeries or so. No, the first first year was the ten Penish surgeries.
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Yeah, first year. I know we were talking about and what we'll
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obviously get onto this later on that we were talking just just off air that
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currently you stand on one hundred and forty six, and we were checking to
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see if that was a world record, which unfortunately it isn't. Yeah unfortunately
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and still a way to go to nine hundred and something, but yes,
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one hundred and forty six is. It's quite staggering. Do you ever sort
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of look both and think, Wow, that's a lot, or is it
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just take it an your stride and go. As I was younger, I
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used to just be like why me, like typical teenage kind of attitude,
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Why me? Why can't I just be like everyone else? That sort of
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thing, because there was skirls around me, even though I had a very
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fit body as a teenager, but I had scars alone my stomach and no
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one else did, or they could wear her heels and I can't. And
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that's something we can talk about a bit later about my feet because of the
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surgeries. But that was the attitude I have. But now I'm like,
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well, it's never going to really stop, so let's just try and make
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a goal. And it's just silly. And my goal is three hundred,
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not that I want to have another one hundred and fifty odd surgeries to go,
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but why not just make fun of it. It's typical Australian thing to
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do anyway. It's just a lot of how to joke that I'm having with
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myself phone with my family, just see how many I can get to.
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But yeah, some people might not like that joke, but oh, I
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think it's great. Why not have a goal. You can't stop having surgeries,
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is why not have a goal? I think it's great. And this
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is one of the reasons, one of the many reasons why I wanted to
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interview, because you're so positive about about Tecks and this podcast is all about
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positivity and not glossing over the hard times because as we all know, with
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Hirshbrungs. It's it's not nice, and there's lots of things that go along
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with Hirshbrungs that are I'm not very very easy to deal with at all.
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But I love your positivity and I love I love the thing that you know,
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you've made the Facebook page and you know obviously the great sporting career and
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and everything in between. So that we will we will get onto a little
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bit later on, but that that's some That's why I know we talked about
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off air that your somebody is really really important to interview for the podcast.
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And i'd like to because you mentioned just just briefly back then about the high
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heels, because you also diagnose with bilateral drop foot. Is that was that
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in both feet or is that because I think he said it was more severe
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in the right than the left. Is that right? Yep? Yep,
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so did in both feet left? You can't really tell any like professionals kind
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of tell. It's more like a delayed in my left. But my foot,
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my right one is completely deformed. It's around three and a half centimeters
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so about each and a bit shorter than my left foot, and it just
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it. Yeah, I can't walk so it doesn't go like hell, when
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I walk, my left foot goes hill toe and my other my right foot
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goes toe hill. I don't know how it does it, but it does.
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Okay, that's sins I'd never. I'd never. Is that is that
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common with somebody with drop foot or is that another sort of no idea?
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I don't really look into it. So another word for it is called club
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foot. So there there are baby born with club foot and stuff that can
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be fixed, but mine's medically induced, so it was a little bit harder.
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And there's like a tendon in my big toe that's shrunk so and were
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tended and you can't really mess around with them too much so because of the
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shrunk and it makes my foot on a wind angle and all that sort of
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thing. So it's not something that can never be fixed, but it's just
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using like personal training to strengthen the ankle around it, so then I don't
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injure myself as much. And yeah, last tic, but I want to
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talk about as well, when you would sort of diagnosed with bilateral drop foot
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and many other things that happened in and around the age of five, so
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you went into a what was supposed to be a twelve hour surgery. It
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turned into seventy two and then woke up with all manner of things. So
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nerve damage, I'm not just reading off my list here, nerve damage,
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paralysis, hypersensitivity, bilateral drop foot, and sciatic nerve damage. Is that
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all just from one surgery? Yep I was septic at the time, so
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I had uh perianal fish perianal abscesses that were affected and fish sulars. They
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were also very infected, so they became septic because the fish ullars were causing
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the holes in my bow and my blood are and all the blood and everything
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was just like mixing. And then when they did the surgery, they put
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a canula, sorry, a epidural canula in my spine, and the sepsis
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went down into the canular site and into my spine and that's how I woke
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up with it. Well that's what they think. Another thing that they think
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is that I'm allergic to whatever medication that they put in the epidura at the
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time. So there's a whole bunch of things out they're been trying to investigate
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ever since. But yeah, when I wake up, you can touch me.
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You had to lay on pig fat and had to do hyper like physio
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and hydrotherapy and all that to learn how to walk again because I became paralyzed
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head down and I had to do like so much. It was no,
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I don't know how my mum did it, to be honest, So did
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that did that make you? I know, we'll talk about your sort of
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high level sporting career and see your daughter's high level sporting career as well.
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Yeah, did that make you more determined to go? Right? I'm I've
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got all these physical issues and whatnot, but I'm I'm going to I'm going
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to become more determined. I'm going to achieve what I want to achieve sporting
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wise. No, no, no, um, my personal trainer changed my
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train of thought with that. I settled personal training with her and I was
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like, I can't do this, I can't do that, and she was
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like, no, yeah we can. But yet she's pretty incredible. She
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became. She was my client first because I did dog walking as a job
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and she was my client. I walked her dog. Then I reached I
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was like, hey, lish, I need personal training. Let's do a
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swamp and then I told her. I was like I can't lift over sixteen
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kilos, I can't do lunges, I can't do squats, I can't do
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this, can't do that. And she's like, let's prove you wrong.
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Let's do it all. And I was like what And I was like,
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no, we're never going to do that. She's like, yeah, trust
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me, we'll get there. And now we're doing it all and more.
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Jeez. Yeah, she's the one that changed. While I was trying to
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talk pretty and how long have you been with uh? Four and a half
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year, isn't wow? Yeah, been training with her for fore and a
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half years. She's she's just wonder woman. She always said that tells me
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it's me. I'm like, nah, man, I couldn't have done it
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without That's brilliant. That's absolutely fantastic. And well, well, Obs,
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you go with your You've been obviously very very heavy into fitness, fitness and
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and I know you dropped a little bit. I know shared some videos about
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lifting and there is exercise you've done which is incredibly impressive. But if we
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go back a little bit, have you always been interested in sports? Yeah?
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So my dad is huge into soccer or football as you would call it.
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We have football in Australia, it's different. We use our hands.
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Yeah, that one. So my dad Italian, and he aspired my brother
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into wanting to be, you know, a famous soccer player, and so
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we played soccer and backyard soccer and all that. Very competitive family like,
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even fishing was a competitive sport for us. And then I got into netble.
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I actually got picked to play for Western Australia, but I had to
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turn it down because I was having surgery and because of how long I had
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to be out of surgery and stuff. Oh sorry not playing netball. Because
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of surgery. It was like six seven months not being able to play netball.
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It took a long time to get back. And because they reconstructed my
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ankle, I had to be really careful on how I played and I never
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had sensation in my foot before I played that ball, so I was just
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really rough and just didn't really care because I didn't get her basically. Then
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after the surgery, I just kept hurting my ankle, my ankle roll and
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just being so much pain and I had to give up the sport. So
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that dream went down the drain pretty quickly. I begged my mom because I
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was twelve at the time, I begged my mom, let's put it off.
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Let's put it off. But she fought so hard. I think she
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fought like five six years or something for me to have this surgery. But
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I had to stop growing before they could do the surgery. And because she
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fought so hard for it, she wanted me to have it, and I
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wanted it. I did want it. But when this opportunity, like I
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got pulled aside. I was just umpiring netball and I got pulled aside with
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the manager of the club and some scouts, and I was like, oh
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my gosh, I'm gonna be in trouble. Like all these people were just
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standing around in suits and just want to talk to me. And then yeah,
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they're like we want you on the Western Australian team for under thirteenes or
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whatever it was. And I was just like yes, and they're like yeah,
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we need you to play and we can fly around wa and like Australia
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and all this sort of stuff. And I went home, like my mom
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my dad picked me up and I went home and told my mom and I
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was like, Mom, we need to put the surgery off. And she's
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like, no, we can't, we can't. But yeah, never mind.
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Networks pretty pull on the body anyway, So I couldn't imagine keep like
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these people that play still in their twenties and thirties. I look at him
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like, I can't be doing that to your knees, man, he needs
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any joints. But he did go back all around sort of twenty eighteen,
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though I didn't. You went back to playing it. I did. I
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did. That's when I learned netball's very you know, it might not be
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a contact sport, but it is on your body. Yeah, yeah,
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I had. There's a lot of twisting, there's a lot of turning.
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The's a lot of a lot of a lot of impact on joints. Yeah,
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because you just got to like run and jump and just not move and
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the jumping and just this like the instant stopping and making sure you're not moving
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with the ball in your hand and stuff. I don't know how people do
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it. I miss playing Nebel, Don't get me wrong, It's so so
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fun. But yeah, I just couldn't do it for long because it was
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it was too much. No, but but fantastic to achieve you know so
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much at a short space time. Fantastic to know that you know you were
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very, very talented with with netball. It must take sort of quite a
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bit of comfort from that. I would imagine to get a get where where
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you know a very small amount of percentage of people will will ever have you
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know scouts come up to them in What did you think was was the issue?
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What did you think you were in trouble for? By the way,
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I don't wr but you don't. At school, wasn't a very nice person.
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So whenever AGU had like a group of people come up to me,
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I was like, I only trouble. I don't worry, and maybe I
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was umpiring wrong with I have no idea how people come and tell you of
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I don't know that. I just love the way you automatically thought I'm in
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trouble rather than actually, oh something's something good might happen from this. I
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do you know, like scouting was a thing. I just played netball.
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I didn't like think of playing for Western Australia and you know, possibly playing
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for Australia one day. I was just playing and I would play for all
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age groups because they're like, oh we need you, we need a player,
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we need a player. And they used to bend the rules because when
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you're when you're a feeling for a team, you can only play wings.
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And I hated wings. I hated wings. I hated center. And they're
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like, all right, for this one, you can play in the goals.
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So I used to just yeah, they used to bend the rules just
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so I could play ways of the best. Who's going to know, No,
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nobody, nobody's going to ask try a team. You would get upset
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because you know, I wasn't in their wings. I was in goals instead.
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So that goal shooter and I'm going off my very limited netball knowledge.
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Okay, I played both, So I played shooter, back and defense.
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Because there's only certain people who can score. Is that right? Yeah,
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you're getting pretty challenging. But so, but only the positions of goal shooter
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can score. Go shooter and go attack. It's not not like basketball where
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any edinbard can score. Not only two people can shoot. Yeah, got
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it, got it. I'm going off my life as a pe teacher sort
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of way. We did netball for like six weeks, and I had to
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learn the rules for six weeks and then teach it. And yeah, so
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I knowledge is very limited, but good enough to teach at primary school level.
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You can kind of get away with it. Yeah you couldn't. Yeah,
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make it up as you go along. So yeah, primary school,
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you definitely can to a certain degree. And as long as you're world like,
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as long as I didn't have somebody, you know, I was teaching
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like you who knew the rules, that was all right. Yeah, we
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get very passionate about the rules. That version. It can cause a lot
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of arguments a little bit, A little bit it so if we again I
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was sort of bouncing around all over the place here, but if we sort
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of take it back maybe two or three years, and I just wanted to
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read out the list by age ten. I know this is up on your
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your Facebook page, but by age ten seven coloss three bags, nine pull
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throughs sixty eight what you call major surgeries, which I thought was like sixty
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eight surgeries in total, but sixty eight just major. I think, to
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be honest, i'd call all surgery. They just surgery, but one hundred
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and thirty in total, and then bilateral drop foot in both feet due to
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psciatic nerve damage all by age ten? Was that again? Was that sort
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of did you sort of realize what was happening? What was going on?
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At that young age, or was it like, right, I'll just go
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in surgery because one hundred and thirty's that's thirteen a year, isn't it.
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So that moment must have been well, one a month give or ta.
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So was it just simply right, next one, next one, next one,
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or did you sort of think about it a bit more at that age.
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I don't think I did. Mum might have something, but from my
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memory, I think I was just always in hospital. That's went from the
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age of birth to ten, I spent so much time in hospital. I
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didn't know anything else. I really struggled with school. So they discharged me
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within a week and be back into hospital. Doctors were starting to think that
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I was institutionalized because I recovered better in hospital than at home as well.
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And just like the with girls, you grow so much from birth to ten,
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then after that it kind of slows down because of all that. My
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body just wasn't coping. And I was born with segmental her shrunks disease,
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So there's short, short, long, total, and then there's segmental.
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Segmental is kind of a bit more rare than the rest of them, and
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having it in a girl's even more rare back then, so they didn't know
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what to expect, and my body just didn't know how to fight off infections
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either, so they didn't know how to to heap infections away. So I
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spent a lot of times, a lot of time on antibiotics, which caused
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all issues. So yeah, I just major, I think was the ones
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that it was Mum that mainly mentioned the major to the minor. I think
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from her point of view, it was the ones that were they're not so
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severe. Severe ones were probably like a couple of hour surgeries in and out
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and recovered, Okay. The major ones were the ones that I was in
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for like hours. It was supposed to be in for like a couple of
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hours and they turned into hours and or a lot of the time in those
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surgeries there I would what's called crash on the table so flat lined basically that
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have to bring me back, and then a lot of time in ICU and
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all that sort of stuff. So I think that's what Mum's classifying as the
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major ones where there was complications and they're not so severe ones where there wasn't
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any complications where I was this in and out. Wow. I mean,
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I think I call all surgery, major surgery. But it's funny. It's
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funny that you you sort of classify them as such, or your mum classifies
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them as ones that you know, if you flat light, it's major,
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if you don't, it's fine, or it's minor. Yeah, yeah,
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I think that's just what mum kind of saw, because she saw everything that
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my daughter goes to like something small and I'll call her an hystericism. How
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did you do this? I'm not even going through as bad as you did,
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and I don't know how strong you were, blah blah blah. She's
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like, well, you got to do what you've got to do for your
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children. You're gotta be strong and you're just gotta make sure that they're going
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to get out okay. And I'm like okay, and she's like, pull
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yourself together, meant needsy. I'm like okay, and she kind of like
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gives me a reality check and I just, you know, got to get
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on with it because that's what mothers do. You know. Mothers have to
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be there for their child, like and father's obviously, but my mom was
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the one that she fought for my life. She was pretty awesome. I've
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got no idea how she did it begins. Yeah, that would have been
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hard. And I definitely know where you're coming from with that because my mom
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was the same she you know, she was there throughout the whole surgeries.
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My dad's been great obviously as well. Yeah, whilst whilst he was at
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work, you know, mum's in hospital with me with my ten surgeries or
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so. I know it's not one hundred and forty six, but it's it's
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ten. But yeah, it's still ten surgeries that your body had said to
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endure though. Yeah, but yeah, definitely, on a on a on
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a serious point, I can't take my mum and us for what she did
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for me and and how and how she's been there. So yeah, the
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bottom line with that, mums are mums are incredible superheroes, absolutely absolutely,
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And to that point, you're obviously a mother yourself to Samantha, Yeah,
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who was born with hirs Sprungs as well, so becoming becoming second generation Hirshprungs.
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Would you like to go through through the story of Samantha. Yeah,
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yeah, I can talk about sam Thankfully, she's not as bad as what
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I went through. I was seventeen when I had her, so when I
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found out she also had hirshprungs. I was beating myself about it quite a
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bit, the blame all that, because no one else in my family has
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sprungs. I've got her shprungs and now she's got so that blame game starts
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playing in your head. The mom give all that sort of stuff. But
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again, I was seventeen, so very hard for a seventeen year old to
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comprehend one being a mom and two your child's all of a sudden sick.
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Because she was born and she was fine. She was passing MEX, she
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was the meculum, she was passing all sorts of things, and she was
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doing really well. And then come like day or I think she stopped passing
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anything. And then it was like day six. From memory, I can't
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really remember. Its nearly fourteen years ago. She mom and I just got
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up were cleaning the house and we started looking at the time. We're like
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nearly lunchtime, and Mom's like, have you fared her today? I was
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like, no, she had spent a sleep all day, and she goes
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that. But we were so busy in just cleaning, and I was taking
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advantage of the fact that I could get this house done with mum. And
31:07
again we did a massive cook up and everything, and we both looked at
31:14
her and she was so dawned as her stomach was massive, and Mom's like,
31:18
all right, let's try and give her a bar to try and reduce
31:22
it. She wouldn't even wake up for a bath. And Mom's like,
31:25
right, we pack a bag. You're going to be there for a while.
31:27
We're going to the hospital. And I was like no, She's like
31:30
no, set Steph. She's got her as frongs and these we gotta go.
31:36
So she's I'm running around trying to pack bags, me and Samantha,
31:40
and she's calling my dad and she's in hysterics and I'm in hysterics and I'm
31:44
just like, no, not again, not again. She can't have her
31:47
clostery bag. We can talk about that too. But my mental health around
31:52
the costerm bags isn't great. A lot of people were probably going to take
31:56
offense to that, because when people hear that, they just do. But
32:02
we'll get that to that in a second. But yes, we got to
32:07
her to the hospital. They kind of rushed us into because they just saw
32:10
her and then just like go straight in doctors came around. The doctor that
32:16
came around open the curtain. She goes, ah, I know what this
32:20
baby has. I remember you, and I remember you, mum, And
32:24
she looks at me. She goes, and my mum and the doctor looked
32:28
at each other, and she goes. And Mom kind of had a sigh
32:30
of relief because she knew a doctor that had been dealing with me. And
32:36
Mom turned around and turns to me. She goes, Doctules one was your
32:39
doctor. And I just went fix her. Just you know what to do,
32:45
now, just do it. And I begged her and I was like,
32:51
do you not do everything? Do everything to not give her a closs
32:54
with your bag. But I obviously had to sign that paperwork to say she
33:00
can have a closs new bag if need be. Samantha had was born born
33:07
with I forgot that. I mentioned that ultra short Hirshbrons disease, but because
33:13
I was born with segmental they instead of cutting out just ten centimeters, that
33:17
cut out to thirty wow. Wow yep, just to be absolutely sure that
33:24
they've got everything. And then they used the whole thirty centimeters to make sure.
33:30
But yeah, because they cut out quite healthy bow within that thirty centimeters,
33:37
they were able to just do a straight fall through and it was just
33:42
dialysis I think for six weeks or six months one of the two. Wow.
33:49
So if we go back to sort of segmental Hirsh Bronx, what would
33:54
be the difference between for people who are listening, what's difference between segment men
34:00
and then sort of short segment short segments like a small section about they from
34:08
one centimeter to ten segmental is as I explain it as a zebra stripes,
34:20
so affected, not affected, infected, not affected, thinking the white as
34:27
not affected, black is affected, tarts. That's the way. That's the
34:31
best way I can describe it. It's just all threat. So yeah,
34:39
wow, Yeah, No, I think that's a that's a fantastic explanation.
34:44
I always I've always struggled, certainly because I'm short segment and whenever anybody asked
34:49
me to pre podcast about Hirsh Brungs, it would always I'd always try and
34:54
get it down to like two or three sentences, but it would do quite
34:59
difficult out sort of going odd at art. Yeah. Yeah, and so
35:05
did you did you find that as well? Growing up? The kind of
35:07
thing? Right if anybody said about Hirshprungs or Hirshprungs was ever or if you
35:14
ever had to explain Hirshprungs, did it take a long time or did you
35:17
manage to get it down to a couple of sentences. As a kid,
35:22
I kind of said, I don't know. I just wasn't born with the
35:27
neves in the bow, kind of like shrumved it off and they're like,
35:30
what how do you go toilet? I'm like, I don't know. I
35:35
didn't quite understand it until I actually started the Hirshbrong's page. I was actually
35:40
going through a really low low time in my life when I started that page.
35:46
A lot of guidecology issues and that's happening again now, and a lot
35:52
of the time where they wanted to do a hysterectomy and because it because of
35:59
all the certain it's too hard to so they're throwing the plus three bag around
36:05
so that I need that and it'll be permanent and blah blah blah. And
36:07
I was, yeah, like I mentioned before, my mental health around classy
36:12
bags isn't great. And I was like, surely I'm not the only person
36:20
in this world that's got to have gynocology issues that needs a hysterectomy because of
36:27
endometriosis, and stuff that needs to have a bag. Surely we're in like
36:34
were at twenty seventeen then, and I was like, you know, things
36:37
have come so far, why are we still doing these ancient surgeries and stuff.
36:46
That's the way I had it. So I had to really throw myself
36:51
into the Hirshmump's page and really share my story and find people and really changed
36:58
my train of thought with that, And that's how I started to learn more
37:01
about it. And because more people contact me about it, and I'm learning
37:08
more about you know, total klonic and long and all that sort of stuff,
37:15
and I'm just like, whoa, what does all this mean? So
37:19
I started researching and then and that's when I started to learn more and more
37:22
and I was like, wow, we really need more awareness about this.
37:27
Very true, very true. And obviously I've come across your page and know
37:31
you from from your your Hirshbrun's page, and it's got less part four thousand
37:37
give or take to three point eight I think give will take followers, which
37:43
is one of the largest in Yeah, oh yeah, wow, do I
37:47
know more about I don't really focus on the followers and stuff. I kind
37:55
of just jump on there and put up whatever's going on in my life the
38:00
time, and then I usually have like my my regulars or my you know,
38:06
the ones that have been following me from the very start, or and
38:09
I kind of have conversations in the comments section treatment with them or they you
38:14
go, oh, I'm sicking trying to find the notification. They start messaging
38:17
me and we have a good old conversation through Messenger and I love it.
38:22
There's a few on there and yeah, it's it's awesome. Found people in
38:28
Perth. And I got something in in the mix happening at Perth Children's Hospital
38:35
soon and I've got a meeting with that and hopefully that takes off. And
38:40
sorry fingers crossed. Yeah, So the per Children's Hospital have a lot of
38:49
support groups regarding like other conditions, but there's nothing for bou and I really
38:57
want to organize a support group for about conditions and I can be that point
39:00
of contact if people want to, you know, talk to me as a
39:04
mom or as someone that's gone through it and now is a mum. At
39:07
least they've got that support person regarding that. The hospital are so keen.
39:15
There's a few, you know, protocols and everything that we're going to sit
39:20
down and have a discussion about. But it might take a little while,
39:22
but I think it's gonna I think it's going to take off, and I
39:27
reckon. There's a lot of people that want to and we also got to
39:30
think called telephone. Yeah, so it's like institution research and money funding all
39:39
that sort of stuff, and there's no bower. There's no research center for
39:44
bows that telephone support. So I don't know how it's going to be done
39:51
because I don't have a bachelor's degree in science and I've gotten none of that.
39:53
I'm just a person that with an ambition and I really want tell us
40:00
to support a business. I can organize a business and organization over here,
40:06
which we don't have prepares, but we'll find we'll find it. We'll find
40:13
it one thing at a time. We'll start off with the support group and
40:17
see where that goes, and maybe that turns into the organization with telethon.
40:22
Who knows, we'll see no change yours. Yeah, absolutely, And you're
40:30
right when because I don't have a science degree or anything, So you're absolutely
40:36
right when you say ambition can take you an awful long way. I just
40:40
podcast with nearly thirty episodes in. I'm not a doctor or a nurse or
40:45
anything, so I do sport for a living, so I don't do don't
40:52
I done to any kind of medicine. I have a sports science degree,
40:57
but it's not it's not quite the same thing. But ambition can take you
41:02
an awful away and I do if there's anything see I can do to support
41:08
that, help that, get the word out, do whatever, I'll absolutely
41:15
help you with that. So if you ever need me, please please get
41:20
in contact. And I'd like to talk about I'd like to talk about the
41:23
page as well. You set it up in twentyeen. What is one of
41:30
the largest, if not the largest. I've done a little bit of research
41:34
on it in the world, and I had Melissa on who runs the UK
41:39
Facebook page. Yeah, fifteen, so it's sort of fifteen weeks ago,
41:45
give or take. And that's nearly two thousand, so it's sort of double
41:50
the size of that. And there's there's some really great content on there,
41:52
some lovely people, and you've very helpfully for my research Britain your story on
42:00
there, so I'm very grateful for that, because that's saved me an awful
42:04
lot of time that you've you documented sort of yearly on there and everything you
42:15
achieved in sort of a year block. So I'd like to if I may
42:19
just go through, just go through that. So obviously it creates twenty seventeen
42:24
and in twenty eighteen, I think was something that I didn't know before coming
42:31
across your page. I just knew Hirshbrung's Awareness month as September, but I
42:37
didn't realize you're the person behind that. Yeah, it's all told me.
42:45
Yeah, I didn't realize that. I obviously, you know, people have
42:49
talked about Hirshbrung's Awareness being in September, but I didn't realize that was you
42:54
do you want to talk a little bit about how that all came about.
43:00
Yeah, So when I started the page in twenty seventeen, I had people,
43:07
and that page grew really quickly. That's when I started looking at followers
43:12
because that was like super exciting to have like all these notifications of people following
43:15
me and I was like, oh, my goodness is growing and I was
43:17
like documenting, Like when I got to five hundred, I was like,
43:21
whoa, what the the fact that it's a nearly four thousand, that's that's
43:25
crazy. I had no idea that it goes to show how much I pay
43:34
attention to that. I'll just literally like to share my stories and have a
43:37
chat to people. But people started messaging me and going, what's the hirsh
43:43
wrong's awareness months and or awareness day or whatever? So I started doing research
43:46
and we didn't have one where I was like hmmm. So I put it
43:50
up the post on there and I was like, hey, guys, we
43:52
don't have an awareness month, we don't have an awareness date. Let's do
43:57
a vote. Should we do a month? Day week? What should it
44:00
be? And then everyone voted months, and I was like why not,
44:02
Let's go big. And then I was like, all right, everyone's voted
44:07
month, what months should it be? And then we did a vote on
44:10
what month it should be and people voted September. That was the most votes.
44:17
I don't I can't remember. I think September was like huge, like
44:22
it just blew it out of the water with all the votes and interesting and
44:29
yeah, it was very weird how that came about. But in saying that,
44:35
I think I chose like maybe six and it was like September, October,
44:39
March August, which is my family's birthdays. And then I think I
44:45
only chose like six because otherwise we're just it was going to be too much.
44:52
And then I started from twenty seventeen. I think it was about July
45:00
August time that I started trying to get the away this month and started doing
45:05
research and people wanted there's a place in America that wanted five and a half
45:09
thousand American dollars. In Australia, that's like nearly ten thousand dollars. I
45:15
wouldn't know what it is in UK money, but it's like I was thinking,
45:22
ten thousand dollars, where am I going to get that from? And
45:25
it was yearly. I had to pay that yearly. Yeah, I was
45:30
like dollars apparently just registered in America. Oh, that that's not what I
45:40
want. That's all you get for tailor. Yeah, it was like registered
45:46
in America radio announcements. But I'm like, how do I even monitor that?
45:54
How do I monitor the fact that it's been you know, announced in
45:59
all out anyway. I was like, no, that's too much, and
46:04
just for America. I was like, no, sorry, America, this
46:07
is about the world not just you. And then I contacted I said to
46:15
I contacted Reach and I was like, Hey, how do you guys,
46:19
reckon, we can get this done. And they're like, we've got no
46:21
idea. Good luck, and I was like, well great. I think
46:25
they were trying at one point as well to get an awareness month, and
46:30
I don't know. I think they probably just ran in the same sort of
46:37
situations I did and was like, we came in a bit too hard.
46:42
I'm not sure. I don't I'm just speculating nothing against them. I think
46:46
they just lost faith kind of thing. Then I contacted the Western Australian Government
46:55
Health Department and I was like, I really want to register this month as
47:02
Heirsprung's Awareness months and I wanted to be worldwide recognition. And they said to
47:14
me that they will have a look into it see if it does have the
47:20
win away this month, and obviously it didn't. And then about a year
47:22
later I emailed them again because it was about I think six months of no
47:29
communication and I was like, Hey, what's going on? And then they
47:35
sent me the screenshot and I was like, Ryan, I screamed. My
47:39
neighbors came over that I thought something like hysterically was going wrong. I was
47:44
on my phone and I was like, ef, thing happened, mom,
47:47
and she's like, what happened? I was like Hirsprung's awareness months freaking happened.
47:52
I was like beside myself. And then I shared it all over Facebook
47:59
and yeah, that's how it happened. Wow, you are the person.
48:06
I am the person by not to have a big head, but yeah that
48:08
was me. Oh, go for it. Absolutely. I'm all about self
48:14
promotion. If my greatest well besides my children, but yeah, definitely my
48:22
one of my greatest achievements was pretty cool. I think that's fantastic, and
48:27
it just as well to talk about that. It's not just a case of
48:32
right, you've got the month, you've got the accreditation for it and stopped
48:37
there. You've done an awful lot in that time and just sort of You've
48:42
done a couple of walks sort of pre COVID one twenty eighteen, one twenty
48:45
nineteen. And you've also been very much into public speaking as well. Is
48:51
that something you've done before? Is this the first time you've gone into public
48:54
speaking. It was the first time I got approached by the medical staff at
49:04
Perst Children's hospital because it was my daughter's conscience nurse that approached me. She's
49:15
like, stuff your stories, and like amazing. She pulled all my documents
49:20
because she's like, I don't know if this is all true, So she
49:23
pulled it all and like, I'm still a case study at this hospital and
49:28
I wasn't even born at the hospital. Like I didn't even go to this
49:31
children's hospital. I went to Princess Margat Hospital. Anyway, she pulled my
49:37
case study out and she just couldn't believe what she was reading and the fact
49:44
that I became an ambassador. She had me looking after my daughter for two
49:46
years and then I was like, hey, look, look this is what
49:50
I'm doing now. Was that if there's anything you eat, want to you
49:57
know, have it in or anything I can do, just let me know.
50:02
And she's like, hey, we have a Continence Foundation conference thing happening.
50:07
Would you be willing to talk about your story? And I was like
50:10
sure. She goes you gotta be talking in front of medical stuff, and
50:15
I was like, are okay? And I kind of like freaked out,
50:20
but I was like super excited and you know, felt, oh, what's
50:24
the word like privileged to do that. I was like, this is cool.
50:30
So I did that. And then because so many so many medical stuff,
50:37
had so many questions for me. They're like, how did you do
50:39
this? And I didn't know that they did that, and oh my goodness,
50:43
that happened. And the doctor spoke before me and he said, in
50:52
ninety seven, nineteen ninety seven, they brought out a sphincter ectomy surgery that
51:00
wasn't even FDA approved at the time, and they had never had done the
51:08
surgery wrong. And I put my hand up and I was like, actually,
51:15
I'm leaving proof in this room right now that you have in ninety seven.
51:22
And that's where it all started with the because that that surgery there was
51:29
only supposed to be very small. And then I got in section from that
51:36
and that's where the pre anal piri anal absence that it to form. And
51:42
after that that was it because instead of cutting a little bit, they overcut
51:49
it. YEP. So he was like saying, oh, we've never overcut
51:57
it and it's a very safe surgery and blah blah blah, like you're wrong,
52:01
and he pulled me aside and he's like, I don't appreciate you doing
52:05
that. I'm like well have the correct things. He goes, I'm going
52:07
to have to pull your case study again, and he actually called me.
52:10
He goes, I'm so sorry, but I said that because you are living
52:15
proof. I was like, I'm sorry to you know, make you look
52:17
like an idiot in front of everyone. But you can't be saying something that's
52:21
so false. Yeah may be true, because otherwise, you know, if
52:24
you said, oh, everything's perfect, everything's fine, you know, and
52:30
and it isn't. Yeah, you've got to you've got to speak up.
52:31
And kudos for you for speaking up. And yeah, because it might have
52:36
been easy to just go yeah, yeah, yeah, fine, you know,
52:38
but but it isn't. And no, it is a very simple surgery.
52:43
They just overcut it. I think because it was so new. I
52:46
was the first person in PERF to ever have that surgery. Because you know,
52:52
why not use me In the guinea pigs, I think we used to
53:00
be used as guinea pigs in one form or another, absolutely, especially nineties
53:06
babies and earlier. I think we were pretty much like, let's just see
53:14
how we go and look if that's the case, where if we were all
53:20
guinea pigs and stuff back then, just to make things better, now than
53:24
I reckon, so be it because the kids nowadays do not have to go
53:29
through as much. I know a little boy that's got long segment and he
53:31
only had to have one surgery sorry one lost to me bag and now he's
53:37
living an awesome life and he's a little golfer now too. So you know,
53:45
there's those stories, and I'm like, that's how far Heirsprung's surgeries have
53:52
really come. Then I'm glad I was a guinea pig for that, if
53:57
that makes sense. True. No, I feel exactly the same way,
54:00
and I've talked a little bit about it before. But there were some pioneering
54:05
surgeries or procedures. I had that nine at the time, like because I
54:12
had at taco cardia where the heart's just beating and beating over and over again,
54:15
so one hundred times a minute. And there was a pioneering surgery actually
54:20
by a junior doctor at the time that said, if you give a shot
54:23
of magnesium to a patient, it slows the heart rate down. And this
54:28
wasn't known. I mean it's just nineteen ninety two, so this wasn't known,
54:32
and thanks to him, I was saved, you know, and I'm
54:37
still here today. So I totally agree that if we could go through things,
54:42
or if we did go through things so it makes other people's lives easier,
54:46
then I'm all for that, absolutely all for And if we circle back
54:53
to your page, obviously you've done quite a bit on there. So your
55:00
your story was recognized in twenty nineteen on radio and magazines, newspapers and how
55:08
how was that? Wow, you really did your research. I do nothing
55:19
else. You are thorough. That's awesome. I kind of wanted the hirschbrungs
55:25
Awenness months out there. I wanted to make sure because it was new,
55:30
I wanted to get it out there. I was like, this is done,
55:31
this is official. Let's just make it happen that it's official. So
55:36
I was messaging and emailing. I spent hours, hours upon hours emailing radio
55:42
stations, newspapers, you name it, I name I emailed them all the
55:50
bigger ones, the bigger hey, radio stations and newspapers around Australia, and
55:54
pers didn't really want to burow it because I wanted money, that's but the
56:02
local pages, the local papers and radio stations where they were kind of like
56:06
smaller, they were like, yeah, let's get you in let's do it
56:09
couch. He's on Boxtel. He was like, yeah, come in,
56:17
I would love to hear about you. I think from memory he's got rowan,
56:22
so he's like, yeah, let's talk about it. I've got a
56:28
bow disease. We need more people like you get onto it. Let's do
56:31
it. You come in, let's talk about it. It was pretty awesome
56:35
because he promoted the walk. We had a couple of people from just randomly
56:40
coming up not knowing what Ho Sprungs is and came and did the walk with
56:45
us. And I was like, whoa, this is incredible. People coming
56:49
up like congratulating me, and I had no idea who they were. They
56:52
just told me that they see me on the couch and I was like,
56:54
whoa. That made a big difference. And Fred is awesome. He's so
57:04
cool, he's so easy to talk to. His team's awesome. I think
57:08
a couple of years later he messaged me and he's like, hey, I
57:13
want to come on the show again. I was like, sure, let's
57:15
go on, let's do it. And I invited a friend because I already
57:19
spoke about my story. I was like, what would you like me to
57:22
talk about it? He goes, oh, do you know anyone that's got
57:23
her shprungs and want to come on? And I was like sure, So
57:25
I messaged my friend and I was like, hey, you want to talk
57:28
about them your boy's story, and she's like yeah, because it took her
57:35
ages and lots of fighting to get her son diagnosed, because they just kept
57:40
brushing her off. She's another young mom and because she has got no no
57:47
history of her shrugs is in her family that she knows of, or her
57:53
son's father's side as well, So she was just kind of brushed off as
58:00
just a paranoid young mum that was just being too paranoid about her son.
58:07
And you know, told her that she's not feeding her son right and it's
58:10
all diet related and blah blah blah. So you know, he is.
58:16
Stuff like that really irritates me when I hear stuff like that. So I
58:22
was a massive advocate for her family at one point as well, because her
58:27
daughter has a bad disease. She has been ruled out for her sprunks,
58:31
but she still has a bad disease, and she she was in ed at
58:38
one point and was almost about to be sent home, but luckily she called
58:42
me, she's a hay steph. I'm going to ED Can you meet me
58:45
either? And I was like yeah, sure. So I dropped everything and
58:46
I went there and they were actually going to send her home and I was
58:52
like, no, we're not going home. I was like, it's not
58:54
happening. We are staying until you can diagnosed her properly. And luckily enough,
59:04
I fought for that because she was passing massive, massive stores and they
59:08
were rock hard and this poor little kid was like two, just screaming every
59:15
time she passed, and I was like, no, this isn't happening.
59:19
No, And from there they actually started to get answers because I put my
59:23
foot down. I was like, no, you're doing the tests on her.
59:27
We don't want the test done, but we need the test done because
59:30
she needs she needs help. She can't be living like this. Yeah.
59:36
Definitely investment. Yeah, so I yeah, that's really really important to advocate
59:45
because if you you know, see you're having experience with hershprungs, you know
59:49
quite a lot about it. So if you feel something, I think a
59:57
lot is no pun intended on this, but a lot about gut feels I
1:00:01
think is really really important. Ye, and I know, I sort of
1:00:07
personally as well. My mum had to fight for my diagnosis and because she
1:00:14
knew thing was wrong, she absolutely knew something was wrong, and the doctor
1:00:16
didn't want to come out because it was a bank holiday Monday, and in
1:00:21
the end he did and then apologized to her and said I'm really really sorry,
1:00:24
and you know, because of your gut feel you Yeah, it was
1:00:29
really really important. So definitely i'd advocate. I'd advocate for that. And
1:00:35
as we sort of circle towards the end of our interview, I'd love to
1:00:39
get your thoughts on now, So for you, for your daughter, for
1:00:46
Sam, obviously you're doing more public speaking now. You've just reached in years
1:00:53
on the Facebook page as we're talking now, June my right, Junish times
1:01:00
about a month ago from when we talked, just reached seven years. So
1:01:04
congratulations, congratulations, And see Sam is taking up competitive swimming and doing very
1:01:13
very well from from world documented whatever you've documented on Instagram at Facebook. So
1:01:22
how how is her national swimming going? She hasn't done nationals yet? Sorry,
1:01:30
yes, state, she was trying to get to nationals this year but
1:01:35
unfortunately she ended up with best artists in her shoulder so we're kind of going
1:01:40
through diagnosis with that, not like treatment for that. This has been diagnosed,
1:01:47
but she hasn't really been swimming this year because she's in a lot of
1:01:51
pain. But she's still somehow managed to do the swimming carnival through school and
1:01:58
then do Interstate into School swim Carnival and hook out Champion Girl for that.
1:02:02
She still made state championships this year for butterfly. Her favorite stroke is bud.
1:02:12
Yeah, her favorite stroke is butterfly. I'm like, wow, you
1:02:15
really like to take the difficult road in life. She loves it. Yeah.
1:02:23
Self taught at the beginning too. Wow. She was like taught like
1:02:28
how to kind of do it. And then she was only taught for like
1:02:31
maybe two three weeks, and then my parents took her up north that's where
1:02:36
they were living at the time, and I was like, mom, she
1:02:38
really needs to get her butterfly downpacked. So she spent I think an hour
1:02:44
every day because it was up north of Western Australia there's always summer, an
1:02:50
hour every day for like three four weeks in the pool, just training herself
1:02:55
how to do butterfly. She came back, she did the assessment and passed
1:03:00
and I was like, whoa. And then she's just loved Butterfly of vers
1:03:04
In and she's incredible at it. So I don't know how she flings herself
1:03:08
out of the water, honestly, no idea. And you all think that
1:03:15
she got by first artists with Butterfly. It wasn't even Butterfly as beast stroke,
1:03:21
oh price, Yeah, yeah, yeah exactly. The easier one that
1:03:25
gives you that there's always the way is that the difficult thing is fine,
1:03:28
then the easier one you end up hurting yourself on it, yeah, exactly.
1:03:32
And she wasn't doing it it through like race, and it's she was
1:03:36
just training. And in training you don't really push speed or anything. Is
1:03:42
just more endurance and technique and everything. And they were doing a breaststroke set
1:03:46
and she hyper extended her shoulders and boom, she felt the pop and that
1:03:52
was it. But no, she is doing incredible. Her goals are still
1:04:00
your come Wealth Games in two years, Olympic Games in four years, Nationals
1:04:10
hopefully next year and the year after. Sorry, we'll see how that all
1:04:15
goes. Hopefully she does it. No, that would be that would be
1:04:18
fantastic. And I'm sure your document progress and on your Facebook and Instagram as
1:04:27
well, and then for the Facebook page in particular, what do you see
1:04:33
the vision for that being in the next sort of few years. So you
1:04:36
just celebrated seven years, so where would you like to be you celebrate ten
1:04:41
years for example, Oh, three ys time. Hopefully the support group at
1:04:50
the hospital has gotten off the ground and you know people being supported hopefully hospitals
1:05:00
and doing the same thing. I'm not sure. I can't speak for other
1:05:02
hospitals, so I don't know what support groups they've got. My main focus
1:05:08
for support groups is for West Australia because it's my hometown. I have a
1:05:15
lot to do with the Ostume Association, but they more focus on people that
1:05:19
need oustomes and all that sort of stuff. But it's not for just people
1:05:27
that don't need that sort of stuff either, So just support and how to
1:05:30
get into if they need support through the school Liaison office at this hospital because
1:05:36
a lot of people didn't know about that. I didn't even know about that.
1:05:39
I had no idea that was a thing. Getting in contact with the
1:05:43
content continence nurs. So many people that have gone, hey, you need
1:05:46
to go to your GP and get a referral for continence nurse because the continents
1:05:50
can help you with your either whether it is in continence where you've got loose
1:05:57
vehicles or you know, the patient, the consonance nurse has a way of
1:06:02
fixing that. And sometimes when you've got fecal in consciency, sometimes also have
1:06:09
urinary conscience, so that also helps because sometimes your blooder, you're also backed
1:06:15
up that your bladder over urinates um or that also stops as well. So
1:06:24
the continent the consonance nurses are great to help with that. And Smount this
1:06:29
conscienceness has been awesome and she's been an amazing support person for Samatta and helping
1:06:33
me with my host Wong's journey as well. So hopefully more and more people
1:06:41
around Australia and the world have got an inspiration off me. I guess to
1:06:49
take these steps and take these leaps, as scary as they are, and
1:06:53
contact the hospitals and be more involved in your own hospital. Would say,
1:07:02
getting getting yourself out there. If you've got the passion to do it,
1:07:04
I reckon, just go for it. Just contact them and trying to find
1:07:09
out who the medical staff are and work with them a little bit. It
1:07:15
is your free time though, but it can also your free time might learn
1:07:20
it into a career without even having a bachelor's or the plomer or whatever the
1:07:27
case may be in medicals, because I don't believe you need a certificate to
1:07:32
know what's going on. You can help one hundred percent, you can help.
1:07:39
So hopefully I've got that inspiration for people in the next three years.
1:07:44
I hope that telethon without making something bow related, because it needs to be.
1:07:55
It can't just be swapped under the rug. I think there's urinary,
1:08:00
very sure. Off the top of my I think there's bladder, but there's
1:08:02
no bow, which is so important because when the bow is not working,
1:08:10
the gut's not working and everything else stops working and it's just really uncomfortable.
1:08:15
So fingers crossed to get something there. I just don't know where to go
1:08:19
from there on how to get to tell. But that's my goal ten years.
1:08:29
Hopefully I did have a goal of Ellen, but she's no longer around.
1:08:33
I'm sure. I'm sure there's somebody else taking her a daytime slaught Nellie
1:08:42
Clarkson show, maybe even only interviews celebrities that I think you made up.
1:08:49
You've got Hirshprungs aware this month. Do you have more of a celebrity than
1:08:51
I have? You should, But just for me, I'll actually one more
1:09:00
thing before before we before we wrap up. Where can people find you?
1:09:05
Find your story? And best way to contact I guess so they can contact
1:09:14
me on either Instagram, which is definitely it's s T E double f y
1:09:18
underscore little or on kicking host wrongs disease on the in the AARs on Facebook
1:09:28
ours is a double S because the other spelling yeah, contact me away.
1:09:40
I don't buy it. You can contact me uh. I will not give
1:09:45
medical advice though, leaves for it that I'll talk about experience, but never
1:09:53
medical advice. I'm not medically professional or anything like that. I will just
1:09:58
speak from experience and what you may or may not wait for you. But
1:10:03
my advice may not work for you. They please don't take that to heart.
1:10:09
I beg you no. It was the first thing I did on here.
1:10:12
I wrote a disclaimer basically saying, don't don't take this as medical advice.
1:10:15
Take its personal stories, take great inspiration from it. But I'm not
1:10:19
a doctor. Please don't take mexical advice. Yeah, exactly, I've had
1:10:26
to do that a lot. Also, with the hirshung kicking hershwrongs. Is
1:10:30
these in the yards. If you would like a Horshwrong's ribber with your name
1:10:34
on it, imum contact me on there. There are just digital photos and
1:10:39
they're free, so they're not like physical copy like physical things. It's just
1:10:45
a picture those But I can do whatever name. As long as the you
1:10:50
send me the correct name in the correct spelling, I will do it correctly.
1:10:56
Make sure you spell your own name correctly, I think, yeah,
1:11:00
trust me. I've had a lot of people send me their thing and I've
1:11:02
done the spelling and they're gone, that's wrong, And I'm like, I've
1:11:05
COPI and pasted your name. What do you mean? I don't know how
1:11:10
to spell your day? You should know how to spell your Yeah, exactly,
1:11:15
fantastic. I just want to say a huge, huge thank you.
1:11:17
I know we've been in contact for sort of several mothers trying to sort of
1:11:21
set this up, and I know we're on different time zones and whatnot,
1:11:25
but I just want to say a massive, massive thank you for coming on
1:11:30
the podcast for everything you do, because you are a huge voice in the
1:11:34
hirsh Bronx community and on behalf of me and a lot of people I've talked
1:11:41
to. I just want to say an enormous thank you for everything you do
1:11:45
and for everything you're continuing to do. Thank you so much. Thanks Tom.
1:11:49
I appreciate you inviting me. It's been fun. It's so easy to
1:11:55
talk to it's awesome. Thank you so much, Thanks Tom. Thank you
1:12:03
for listening to the podcast. Find us on Instagram and Tom's Underscore Hirshbrun's Underscore
1:12:10
podcast. Listen to previous episodes on Spotify by searching Tom's Hirshbrun's Podcast