Latest / Tom's Hirschsprung's Podcast / Episode 31 - With Lori

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Episode 31 - With Lori · Tom's Hirschsprung's Podcast

0:05
Speaker 1: You are listening to Tom's Hirshprun's Podcast, where I provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
0:11
Speaker 1: people around Hirshprung's disease and sports.
0:39
Speaker 2: Hello and welcome to episode thirty three of Tom's Hirshprung's Podcast.
0:45
Speaker 2: A special guest with me today, I have Laurie, who
0:48
Speaker 2: runs the campaign Hirshprungs Aware Bears on Facebook, and we'll
0:53
Speaker 2: talk about that later on, amongst many other things as well.
1:00
Speaker 2: Welcome Laurie, Welcome to the podcast.
1:02
Speaker 3: Thank you for having me, and.
1:04
Speaker 2: You're very welcome. Thank you for coming on.
1:07
Speaker 1: Now.
1:07
Speaker 2: We were sort of chatting beforehand, and there's lots of
1:10
Speaker 2: really interesting nuggets of information that we will bring up
1:13
Speaker 2: a little bit later on. But i'd like to start,
1:16
Speaker 2: if I may, just with your daughter Alexis, who's born
1:21
Speaker 2: in nineteen eighty six and diagnosed with hirshprungs. The story
1:28
Speaker 2: of Alexis Alexis diagnosis is out there on the reach
1:33
Speaker 2: HDU website, but we thought we'd go through it just
1:36
Speaker 2: as us as well. So i'd like to start, if
1:41
Speaker 2: I may, just from the very beginning. So Alexis is
1:44
Speaker 2: born comes from home from hosts on and sort of
1:48
Speaker 2: all the normal symptoms if you will, of hirshbrungs are there,
1:56
Speaker 2: the whole sorm, not feeding great deal and throwing up
2:01
Speaker 2: and everything. From there, At what point did you start
2:05
Speaker 2: to think there's something a bit a miss here.
2:09
Speaker 3: Within the week, you know, I was trying to feed her.
2:13
Speaker 3: She was projectile vomiting, and she hadn't had a bowel
2:17
Speaker 3: movement the whole week that we came home from the hospital.
2:22
Speaker 3: So of course I notified the doctor and he took
2:25
Speaker 3: a look at her, and he didn't seem to think
2:29
Speaker 3: anything was too unusual. But we got her going. But
2:35
Speaker 3: then she was going consistently like an apple sauce consistency
2:39
Speaker 3: for days. So took her back to the doctor. Oh well,
2:43
Speaker 3: now let's put her on you know, we had her
2:46
Speaker 3: on a stool softener. Now let's put her on something
2:48
Speaker 3: to make it harder. This was just back and forth,
2:52
Speaker 3: back and forth went on for four weeks till finally
2:57
Speaker 3: she got the bloated bell and really loud guess rumblings.
3:04
Speaker 3: I knew she was very uncomfortable that point. They did
3:07
Speaker 3: hospitalise her and we were in the hospital a few
3:14
Speaker 3: days and they did get her to path quite a
3:17
Speaker 3: constipated nugget, and they said that's what it was. They
3:21
Speaker 3: think she had an anal stenosis a small canal from birth.
3:26
Speaker 3: So we just had to stretch that and do therapy
3:29
Speaker 3: like that. So that improved a little bit. But then
3:35
Speaker 3: we were right back where we So it's three months old.
3:39
Speaker 3: They took another look at her. She ended up being
3:43
Speaker 3: our pediatric surgeon. He was pretty sure she had her shprums,
3:47
Speaker 3: but we couldn't get that clinical diagnosis. So young parents,
3:53
Speaker 3: you know, we were like, no, we don't want to
3:55
Speaker 3: cut into her. We don't want this colostomy that you're
3:58
Speaker 3: telling us about. So we didn't allow them to do
4:01
Speaker 3: that at three months. And then we went up to
4:05
Speaker 3: six months where she started silent foods excuse me, and
4:13
Speaker 3: that didn't work at all. And then is when she
4:15
Speaker 3: got the major blockage, hospitalized for three week emergency surgery,
4:21
Speaker 3: finally diagnosed with her sprums.
4:24
Speaker 2: Right, So it very sort of similar story, I think
4:28
Speaker 2: to a lot of people around that age, or certainly
4:30
Speaker 2: the people I've spoken to me included, where you do
4:35
Speaker 2: have to keep going back and forth and back and
4:37
Speaker 2: forth and back and forth to really sort of fight,
4:42
Speaker 2: I guess that for that diagnosis. And I think again,
4:49
Speaker 2: speaking to people who've had children either recently or children
4:54
Speaker 2: with her sprungs recently or within the last five or
4:56
Speaker 2: ten years, I'm seeing more of trend towards that improving. Thankfully,
5:04
Speaker 2: I'm seeing a lot of a lot more early earlier diagnosis.
5:09
Speaker 2: And I think just sort of raising awareness what you
5:13
Speaker 2: do with the bears and obviously what lots of people
5:15
Speaker 2: do around the world really kind of helps with that.
5:19
Speaker 2: If we can get more awareness out there, get it,
5:21
Speaker 2: get it, get HD diagnosed, diagnosed sort of quicker, obviously,
5:28
Speaker 2: the better, the better for everybody.
5:31
Speaker 3: Absolutely, you know, just for parents to know such a
5:34
Speaker 3: condition does exist, Yeah, you know, because you can't see it.
5:40
Speaker 3: You can't see it except for the bloated belly and
5:44
Speaker 3: the symptoms. But to put an end to it, you know,
5:48
Speaker 3: it's a tremendous help in dealing with it.
5:52
Speaker 2: Yeah, hugely, hugely, And I know sort of from from
5:55
Speaker 2: my mum's experience as well, having to then go and
5:59
Speaker 2: explain to die is what hirshprungs is. Did you have
6:03
Speaker 2: that as well or did you did the doctor sort
6:05
Speaker 2: of know what hirshbruings.
6:07
Speaker 3: Is My local doctors were totally lost, but we were
6:11
Speaker 3: very unlucky to have the Hirshprung's guru about an hour
6:18
Speaker 3: away from us in Harrisburg, Pennsylvania, and he treated everyone
6:23
Speaker 3: around here for Hirshprungs. And we have an Amish community
6:27
Speaker 3: in Lancaster, Pennsylvania about another hour away from us, where
6:32
Speaker 3: there's a lot of Hirshprungs because they intermarry in families
6:35
Speaker 3: a lot. I don't know if you're familiar with Amish,
6:39
Speaker 3: but they Yeah, so there's a lot in that community.
6:44
Speaker 3: He was dealing with all of those, so he was
6:48
Speaker 3: the expert around here. So he had to convince me
6:53
Speaker 3: that she hain't hirshprungs.
6:55
Speaker 2: Wow.
6:56
Speaker 3: Yeah, he absolutely saved her life.
6:59
Speaker 2: She is dying.
7:01
Speaker 3: OK.
7:02
Speaker 2: Thank you so much for sharing. And just on family.
7:06
Speaker 2: I know we were talking for a little bit off air,
7:09
Speaker 2: and you've done quite a lot of family history research
7:14
Speaker 2: into hershebra. What types of things did you find when
7:19
Speaker 2: you were when you were researching?
7:22
Speaker 3: Well before we had it, we had friends, very good
7:27
Speaker 3: friends of ours, whose son had rushbruns. So when they
7:30
Speaker 3: started talking to us about it, we knew what they
7:33
Speaker 3: were talking about. And I thought that was kind of weird.
7:37
Speaker 3: So at a family picnic, I discovered that another like
7:44
Speaker 3: second cousin's child had first runs and I'm like, that
7:47
Speaker 3: is odd. So started looking into the genealogy. Found that
7:53
Speaker 3: the mother of that child was also a cousin to
7:56
Speaker 3: me on my side, as well as her husband been
8:00
Speaker 3: a cousin to my husband. Their union created Hirshprung's child.
8:05
Speaker 3: So I thought, well, I'm going to look back in
8:08
Speaker 3: time in my other friend's family see if we're related anywhere.
8:13
Speaker 3: And I found us related to common ancestors. Back in
8:17
Speaker 3: the eighteen hundreds, our families intermingled, and four generations later,
8:23
Speaker 3: here is this current child with Hirshprungs. So that was,
8:29
Speaker 3: you know, incredible to me. And then two or three
8:34
Speaker 3: years later another child was born and I said, I'm
8:36
Speaker 3: going to look at his genealogy. He has Hirshprungs. Found
8:40
Speaker 3: those common ancestors. And then a few years later I
8:46
Speaker 3: put on a family blog somewhere about if anyone has
8:50
Speaker 3: any connections to hirs Sprungs, please contact me. I get
8:53
Speaker 3: this phone call from a woman again in Harrisburg, an
8:56
Speaker 3: hour away. She said, my heart sank when I read
8:59
Speaker 3: that I'm into genealogy or family, and we just lost
9:03
Speaker 3: our sun lash years so we connected back to being
9:08
Speaker 3: related to him as well. They didn't know what it was.
9:12
Speaker 3: He only lived eleven days. You know, had she seen
9:15
Speaker 3: that a year before, maybe you know, maybe he could
9:21
Speaker 3: have been said, but he was not.
9:24
Speaker 2: Wow, that's it. It's incredible that that goes back so
9:28
Speaker 2: many different generations from and so many relatives and people
9:35
Speaker 2: sort of in sort of close proximity to you. I
9:39
Speaker 2: have been doing a little bit of sort of research
9:42
Speaker 2: and digging through the podcast and trying to find the
9:48
Speaker 2: I guess percentage of people diagnosed with Hirshprung's. So if
9:53
Speaker 2: I was to have a child, for example, what would
9:55
Speaker 2: be the chances et cetera, et cetera. And it doesn't
9:58
Speaker 2: seem to be necessarily a concrete it's going to be
10:01
Speaker 2: this in this or not for example, like there's more
10:05
Speaker 2: of a concrete. It's one in five thousand just general children,
10:11
Speaker 2: babies that are bought, and it's say a four to
10:15
Speaker 2: one ratio boys to girls as well, which is something
10:20
Speaker 2: else that really shocked me because obviously being or having hirshprungs,
10:24
Speaker 2: alexis obviously female. Having hirshprungs, they end up sort of
10:28
Speaker 2: being doubly rare. I guess, yes.
10:32
Speaker 3: And in this little analysis I did of these five kids,
10:36
Speaker 3: she's the only female. There's four boys. Now does that
10:40
Speaker 3: just mean that it's like twenty five thousand people that
10:43
Speaker 3: we're talking about or is there something to that, you know,
10:48
Speaker 3: because if it's one in five thousand, it's hirshprungs, but
10:53
Speaker 3: only the fifth one of them is a girl. To me,
10:55
Speaker 3: I think a girl is one girl in twenty five
10:59
Speaker 3: thousand people have her sprungs.
11:02
Speaker 2: Yes, Sorry, I was just do the mental maxima break
11:05
Speaker 2: for a second.
11:06
Speaker 3: But now don't I realize you know, now there's total colonic,
11:12
Speaker 3: there's long segment, and those have different percentages. Alexis was
11:17
Speaker 3: actually short segment hers sprungs, but because it went six months,
11:21
Speaker 3: she had to be treated as long segment. A whole
11:23
Speaker 3: lot more of her in testing was removed than if
11:27
Speaker 3: we'd have gotten it within the first week or two,
11:30
Speaker 3: so a lot of her colon was damaged, so she
11:34
Speaker 3: had an illiostomy instead of a colostomy. So yeah, but
11:44
Speaker 3: you know that that's how I look at it for
11:46
Speaker 3: a girl. Now, whether that's correct or not. I don't
11:48
Speaker 3: know it because, like I said, you'd have to categorize
11:51
Speaker 3: total colonic and long segments.
11:55
Speaker 2: Yeah, why about my mental capacity? I think I'll still
12:00
Speaker 2: I'll stick to I'll stick to do what I do
12:02
Speaker 2: and leave that to doctors and experts because I'm yeah,
12:07
Speaker 2: I know various stats. But in terms of short segment,
12:11
Speaker 2: long segment, tots colonic, I no, don't know, don't know,
12:17
Speaker 2: but I.
12:17
Speaker 3: Think in total colonic you may have a fifty to
12:20
Speaker 3: fifty chance of piersing it on. Right. There is a
12:24
Speaker 3: chart on the study website that we've been involved in
12:28
Speaker 3: our Doctor Truck lorority at New York University, and it
12:33
Speaker 3: has a chart that if you were a male with
12:35
Speaker 3: short segment, here's your percentage risk. If you're female with
12:39
Speaker 3: long segment, here's your percentage of risk. So Lexis is
12:43
Speaker 3: from what I could tell that chart, she was at
12:45
Speaker 3: about twenty nine percent of piercing it on to her children, right.
12:52
Speaker 2: Yes, And I wanted to move on to that as well,
12:56
Speaker 2: because on the story on the website is very very
13:00
Speaker 2: much Alexis in the early days, early months, and then
13:05
Speaker 2: at the end of the story it doesn't mention that
13:09
Speaker 2: she then gets married which is fantastic, and had three
13:13
Speaker 2: children as well, none of which have hirshbrums. Yeah, person
13:22
Speaker 2: less stress. Oh, now I know you've you've mentioned this
13:26
Speaker 2: story to me and told the story of how Alexi's
13:30
Speaker 2: children came to be and and not diagnosed with hirshprungs.
13:34
Speaker 2: Did you want to share that story as well?
13:37
Speaker 3: Yes. After she was married for about a year to
13:41
Speaker 3: two years, they were she was attempting to have children,
13:46
Speaker 3: to get pregnant and it wasn't happening. So again off
13:49
Speaker 3: to the doctors to devastatingly learn that scar tissue from
13:55
Speaker 3: her babyhood surgeries had invaded her reproductive organs, crushed her
13:59
Speaker 3: for opian tubes, so it was not possible for her
14:03
Speaker 3: to get pregnant. Naturally, she had assist on her one
14:07
Speaker 3: ovary and so that overy in tube had to be removed.
14:11
Speaker 3: They didn't even see her second overy because it was
14:13
Speaker 3: so encased in scar tissue. Devastating, so they talked to
14:20
Speaker 3: her about possibilities of IVF if they can find her
14:24
Speaker 3: other ovary, if they can harvest eggs, So exploratory surgery,
14:30
Speaker 3: thank god, found her other overary was able to get eggs,
14:36
Speaker 3: and she started on the IVF path ups and downs.
14:42
Speaker 3: I mean, you know, you're so bopeful, and then it
14:46
Speaker 3: doesn't work. And she gone through ten different transfers of
14:52
Speaker 3: eggs ten times, hoping to be pregnant on the sixth time.
14:59
Speaker 3: Of course, it's very expensive too. They were running out
15:02
Speaker 3: of money, so thank goodness, on the sixth time, she
15:06
Speaker 3: got pregnant and great pregnancy, had to have c section
15:12
Speaker 3: because of all her scarring and her abdomen, but delivered
15:17
Speaker 3: a healthy baby girl. She'll be nine here in two months.
15:23
Speaker 3: So then it went a few years. They thought that
15:26
Speaker 3: would be their new child after what they went through.
15:29
Speaker 3: But she got baby fever again and her doctors were
15:32
Speaker 3: in favor of her trying again, said her wound was great,
15:35
Speaker 3: she could do it. So went through it all again.
15:39
Speaker 3: If more disappointments. It didn't work. It didn't work. We were
15:42
Speaker 3: down to two embryos, implanted one beautiful, healthy baby boy.
15:50
Speaker 3: We were static. Two three years later. It's like, o
15:54
Speaker 3: came you have when embryo left? Are we gonna try again? Whatever?
15:58
Speaker 3: And they told her it we would not eat. Sever
16:03
Speaker 3: options were to let the egg expire, which we don't
16:06
Speaker 3: believe in. Donated to another couple who couldn't have children,
16:11
Speaker 3: which was hard for us to grasp that one of
16:14
Speaker 3: our children would be elsewhere. Yeah, you know, or implant work.
16:20
Speaker 3: Beautiful baby boy, healthy baby boy born. She had some issues.
16:26
Speaker 3: He was very premature, but three today and greet so
16:31
Speaker 3: we're very blessed.
16:33
Speaker 2: Fantastic, that's brilliant news. And congratulations as well, thank you,
16:39
Speaker 2: and and none with with Hirshprungs as well, which again
16:43
Speaker 2: I'm not the percentage or I have no idea how
16:50
Speaker 2: coward hurt were you given a kind of or what
16:54
Speaker 2: was sorry was your daughter given that kind of percentage
16:56
Speaker 2: that maybe hirschwangs would be present or was it just
16:59
Speaker 2: not discussed to talk?
17:01
Speaker 3: It wasn't discussed very much. They knew about it. They
17:03
Speaker 3: knew that was the reason that she was having IBF.
17:08
Speaker 3: We did not have the genetic testing. The only genetic
17:12
Speaker 3: testing we did was for that study. And again they
17:15
Speaker 3: couldn't share that with us because it had National Institute
17:19
Speaker 3: of Health money in it and they can't have someone
17:23
Speaker 3: have a personal gain out of that. So we don't know.
17:27
Speaker 3: We don't know if we have g never been privately
17:31
Speaker 3: tested for that.
17:33
Speaker 2: Yes, so he was you're talking to me just off
17:38
Speaker 2: air and beforehand about about this this testing that you
17:42
Speaker 2: just mentioned. Did you want to just expand a little
17:44
Speaker 2: bit more on that.
17:46
Speaker 3: Oh? Yes. When when I discovered these genetic connections, like
17:52
Speaker 3: many Hirschbrun's families, I had to be persistent. Nobody wanted
17:56
Speaker 3: to listen to me. I kept calling and calling and
17:59
Speaker 3: talk to anyone I could about it. Finally I got
18:01
Speaker 3: in touch with a research team at the University of
18:04
Speaker 3: Pittsburgh convinced them to come out to my own house
18:09
Speaker 3: four hours away, into my kitchen and draw blood from
18:13
Speaker 3: this small group of four families that gathered that have
18:18
Speaker 3: hershprums that are in my genetic makeup. So they did that,
18:27
Speaker 3: and they did not see what they thought they would see.
18:32
Speaker 3: When they went back and studied the DNA, they were
18:35
Speaker 3: disappointed at first, but then a few months later they
18:40
Speaker 3: recontacted me asked me to sign off on all these
18:43
Speaker 3: studies and stuff again because they found something very interesting
18:48
Speaker 3: and they wanted to publish a paper on what's called
18:51
Speaker 3: junk DNA. They thought it was previously DNA that didn't
18:57
Speaker 3: mean anything, and come to find out, it's beer very
19:00
Speaker 3: important in genetic studies. They told me it wasn't just
19:03
Speaker 3: for Hirschbrung's book for all genetic diseases, even like Parkinson's
19:07
Speaker 3: and stuff. They learned a lot about this junk DNA
19:12
Speaker 3: that they thought wasn't important before. Now they couldn't tell
19:15
Speaker 3: me anything more than that, but they did tell me
19:19
Speaker 3: that we contributed a very important piece of information on genetics.
19:27
Speaker 2: Yeah, fantastic, But obviously they couldn't tell you because of
19:31
Speaker 2: the funding and the people at everybody who was involved.
19:34
Speaker 2: But that that's interesting to know that you that you
19:37
Speaker 2: did contribute in a huge way, which again, any sort
19:43
Speaker 2: of Hirschbrung study I think is fantastic to have. Ye. No,
19:48
Speaker 2: that's that's fantastic to know. Another another subject that I
19:53
Speaker 2: mentioned that the very beginning was your Hirshbrungs Aware Bears,
19:58
Speaker 2: which I think is how I how I found you
20:00
Speaker 2: in the first place, Hirshbrung's aware Bears on Facebook. What
20:06
Speaker 2: was the sort of the how and why did that begin?
20:10
Speaker 2: Obviously the why you know, having a Hirshbrung's connection in
20:14
Speaker 2: the first place, but what made you think, right, I
20:16
Speaker 2: need to need to do something.
20:20
Speaker 3: From back early like nineteen ninety eight, I started getting
20:24
Speaker 3: involved in sport groups on the internet. Alexis was around
20:30
Speaker 3: twelve years old. Thirteen years old, so at the time,
20:37
Speaker 3: everyone was just so happy to find each other and
20:39
Speaker 3: it was global. So we became very good friends, mothers
20:44
Speaker 3: who are like sisters. Even today, I have some very
20:47
Speaker 3: close friends from from that. So as I went through that,
20:53
Speaker 3: you know, even though our struggles were lightning, I just
20:56
Speaker 3: like to be inspirational to the other families that I
21:00
Speaker 3: knew what they were going through being isolated. So I
21:07
Speaker 3: just you know, we were very supportive of each other.
21:11
Speaker 3: As things went on, I started wondering what could I
21:15
Speaker 3: do for these children, how could I help? And it
21:19
Speaker 3: just kind of organically came about because I've so all
21:23
Speaker 3: my life and started making these teddy bears and thinking, oh,
21:28
Speaker 3: you know, somebody was sick, so I sent them, I
21:31
Speaker 3: you know, sent them a bear. I sent them either
21:34
Speaker 3: a dog with an outshit I made or something. So
21:38
Speaker 3: just kind of rolled into this. Also, there's an organization
21:42
Speaker 3: here in the States called Victory Junction Gang Camp. It's
21:46
Speaker 3: a medical camp for ill kids, and they asked for
21:51
Speaker 3: people to make teddy bears as a keepsake for the
21:54
Speaker 3: kids for the week that camp. So I've done that
21:58
Speaker 3: and in doing that then I started thinking, well, I
22:00
Speaker 3: could do this for my Hirshbrungs kids too, and then
22:03
Speaker 3: I started putting the little patch on with a cricket
22:05
Speaker 3: saying Hirshprung's Aware Bear with a talk card telling what
22:08
Speaker 3: it is. A child can then maybe share that with
22:11
Speaker 3: the rest of their families, show them what they have,
22:14
Speaker 3: or you know, give them information. So that's how that
22:19
Speaker 3: came about. I've given over one hundred stuffies Teddy Bears
22:25
Speaker 3: to Victory Junction Gang Camp over the years. I've given
22:30
Speaker 3: over fifty two World Surgical Foundation, which was started by
22:34
Speaker 3: our insurgent. He goes around the world and does free
22:36
Speaker 3: surgeries on underserved countries. So I supplied Teddy Bears to
22:43
Speaker 3: him for the children for comfort and so forth. So
22:47
Speaker 3: it's just been very fun.
22:49
Speaker 2: It's fantastic. And you've been doing this since nineteen ninety eight.
22:53
Speaker 3: Well, I've been an advocate for Hirshprung since ninety eight.
22:56
Speaker 3: I've been doing the bear since around twenty fifteen. I'd say, ah, yeah.
23:03
Speaker 2: So brilliant, No, that that's fantastic. So yeah, nearly ten
23:07
Speaker 2: years ten years of Teddy Bears. Yes, fasting and I
23:11
Speaker 2: see you have. I know this isn't a video podcast,
23:13
Speaker 2: its audio, but I see you have a lot of
23:15
Speaker 2: the bears behind you. One that I was particularly interested
23:20
Speaker 2: in is the one that has bees all over it. Okay,
23:25
Speaker 2: because if I'm right in saying, ah, yes, here it
23:30
Speaker 2: is here, it is? Am I right in saying there's
23:34
Speaker 2: a link of this, I don't know whether it's this one.
23:36
Speaker 2: I'm sure it's this one between something to with diabetes?
23:41
Speaker 2: Is that right as well?
23:43
Speaker 3: Well, there's not a Hirshpruings link. But when I do bears,
23:48
Speaker 3: if I've never sold them, you know, for my own gain,
23:54
Speaker 3: I always try to contribute to a good cause. Usually
23:58
Speaker 3: it's Hirshpruings related. But my other daughter has Type one dity,
24:02
Speaker 3: so this particular bear, I had one eBay for charity
24:07
Speaker 3: and I was going to donate to a diabetes foundation.
24:13
Speaker 3: I'm finding it harder to market my bears now because
24:17
Speaker 3: I'm not as involved in this pert group since my
24:20
Speaker 3: daughter's thirty eight years old. But it's getting harder and
24:26
Speaker 3: harder to market the bears and have people at with
24:29
Speaker 3: are not to mention the expense my shipping has doubled
24:33
Speaker 3: in the time that I started doing this. You know,
24:36
Speaker 3: it cost me eight nine dollars now just to ship
24:39
Speaker 3: one of these within the state. So my idea for
24:46
Speaker 3: this bear was to contribute to diabetes research, but I
24:50
Speaker 3: took it down because I wasn't getting burnment. It's on it.
24:54
Speaker 2: No, it's the reason why I ask. And I was
24:58
Speaker 2: very interesting that there's a link of diabetes in your
25:03
Speaker 2: family because my younger brother, people who don't know this,
25:07
Speaker 2: he is part of a team that runs a podcast
25:11
Speaker 2: called Team Type one Style. He has Type one diabetes
25:15
Speaker 2: and he runs cycling team with and everybody in that
25:19
Speaker 2: cycling team has type one diabetes. So I run the
25:23
Speaker 2: Hirstprung's podcast. He runs a type one diabetes podcast. So
25:27
Speaker 2: that was just why that that sort of struck a
25:30
Speaker 2: chord with me. Yeah, but do you have kind of
25:34
Speaker 2: a favorite as such, a favorite beer?
25:41
Speaker 3: Not particularly just this ps April. I did make one
25:48
Speaker 3: for Victory Junction Junction gangs out of out of a
25:54
Speaker 3: sabric that's used on the Kyle Petty Charity Ride, which
25:58
Speaker 3: is something else here in America, a motorcycle ride that
26:01
Speaker 3: raises millions of dollars for this camp, and it's headed
26:06
Speaker 3: up by a NASCAR family who lost their son in
26:09
Speaker 3: a race, so they sent me one of their face
26:13
Speaker 3: scarbs that they use on their ride, had their logo
26:16
Speaker 3: on it, and I made a big beer, my one
26:19
Speaker 3: hundredth bear for them out of that. So that was fun.
26:25
Speaker 3: I enjoyed that I sent that off. It's the twentieth
26:28
Speaker 3: anniversary for that camp, so I sent them twenty bears,
26:31
Speaker 3: which also made it one hundred beer donation for me,
26:34
Speaker 3: and that last bear was made out of their own logo.
26:38
Speaker 2: Fantastic. Now, that's fantastic to hear. And just as we
26:43
Speaker 2: as we sort of wind down towards the end in
26:47
Speaker 2: terms of the Hirshbrungs or ware Bears, and you said,
26:52
Speaker 2: it's it's quite a lot of work and everything at
26:57
Speaker 2: the moment, but what you see is sort of the
27:00
Speaker 2: future or the bears as such.
27:05
Speaker 3: Yeah, you know, I'm still working full time. We'll be
27:10
Speaker 3: retiring here in a few years. And I thought, well,
27:12
Speaker 3: maybe this is something I can push then, but there
27:16
Speaker 3: would have to be a demand for it. You know,
27:19
Speaker 3: it's a teddy bear. I don't know if people are
27:22
Speaker 3: that interested in in that kind of toy any longer,
27:26
Speaker 3: but I think it's great for a child to receive
27:29
Speaker 3: something in the mail just for them, something with their
27:31
Speaker 3: identity on it, you know, something that has the word Hirshprung.
27:36
Speaker 3: You know they can connect with they can also raise
27:39
Speaker 3: awareness with it. So again, the cost kind of gets
27:44
Speaker 3: prohibitive at a point. You know, I hate to have
27:48
Speaker 3: to ask for shipping money, but it gets pretty expensive.
27:55
Speaker 3: So and you know, in our market, in our community,
27:58
Speaker 3: it's tough to do because you know, with a child
28:02
Speaker 3: with medical conditions, expense is a problem. You know, healthcare
28:08
Speaker 3: is expensive now matter how you look. So we're you know,
28:12
Speaker 3: expecting them to be able to purchase a bear, have
28:15
Speaker 3: it shipped. It gets expensive. So I don't know what
28:19
Speaker 3: the future might be for the for my program.
28:22
Speaker 2: Okay, and and just very lastly, where can people find
28:29
Speaker 2: you find what you're you're you're up to with the
28:32
Speaker 2: with the bears?
28:33
Speaker 3: Probably mostly on Facebook anywhere. It's uh, make a diff
28:39
Speaker 3: hd dot com on Facebook because it was my page
28:45
Speaker 3: started as a make a difference kind of page and
28:49
Speaker 3: has morphed into mostly her Springs Aware Bears. So if
28:52
Speaker 3: you go to Facebook dot com make a d I
28:56
Speaker 3: F F H D, it would take you to Hirshpruing's
29:00
Speaker 3: peak Aware bear page brilliant.
29:03
Speaker 2: Thank you ever so much, Thank you so much for
29:05
Speaker 2: coming on, and also thank you so much for everything
29:09
Speaker 2: you do for children with Hirshprungs. For the amount of
29:13
Speaker 2: bears of one hundred and fifty bears in a decade
29:18
Speaker 2: or so, so that is a lot of work you've
29:21
Speaker 2: put in of your own time. Yeah, so just from
29:27
Speaker 2: everyone who's received a bear, for all of the great
29:29
Speaker 2: advocacy you do as well, I just want to say
29:32
Speaker 2: thank you ever so much and thank you for coming
29:34
Speaker 2: on the podcast.
29:35
Speaker 3: But thank you for having me and I'm talking about
29:38
Speaker 3: Hirshprungs freezing awareness.
29:40
Speaker 2: I can my pleasure. Thank you, Thank you for listening
29:47
Speaker 2: to the podcast.
29:48
Speaker 1: Find us on Instagram Tom's Underscore Hirshbrung's Underscore podcast. Listen
29:53
Speaker 1: to previous episodes on Spotify by searching Tom's Hirshbrung's Podcast
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Speaker 1: fourteen
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Speaker 2: Fourte