Latest / Tom's Hirschsprung's Podcast / Episode 148 - Laurence and Paddy Tottingham

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Episode 148 - Laurence and Paddy Tottingham · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirschsprungs podcast, a space where
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Speaker 1: we talk openly about living with Hirschsprungs disease. Whether you
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Speaker 1: live with it, care for someone who has it, or
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Speaker 1: just want to understand more, this podcast is for you.
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Speaker 1: Each episode we will explore real stories and honest conversations
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Speaker 1: about a condition that often goes unheard. Thank you for
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Speaker 1: tuning in. Hello and welcome to episode 148 of Tom's
0:47
Speaker 1: Hairsprings podcast. I am delighted this morning to be joined
0:51
Speaker 1: by Lawrence and Paddy.
0:52
Speaker 2: Welcome, guys.
0:55
Speaker 1: Thanks so much for coming on. Now, we are here
0:59
Speaker 1: to talk about, well, a variety of things. I think,
1:03
Speaker 1: in talk to do with Hirschsprungs. And Paddy, obviously you
1:06
Speaker 1: have Hirschsprungs.
1:08
Speaker 2: We need to talk.
1:08
Speaker 1: About sort of, I think a lot of rare disease
1:12
Speaker 1: in general. But I guess whoever would like to start,
1:17
Speaker 1: possibly Lawrence, I think seeing as it may be easier. Paddy,
1:22
Speaker 1: you might have been a bit too young to remember the...
1:24
Speaker 1: I guess try and do the timeline.
1:27
Speaker 2: I try to do the timeline as best I can.
1:29
Speaker 2: I've sort of been flicking through medical notes because obviously
1:33
Speaker 2: Paddy's 15. I think by the time this goes out,
1:35
Speaker 2: he will be 16 actually. It's really nice doing this
1:38
Speaker 2: during September because it's obviously Hirschsprung's Awareness Month and I
1:41
Speaker 2: think that's really quite significant for me and for Paddy.
1:47
Speaker 2: But yeah, so Paddy's 15. He's got long segment Hirschsprungs
1:54
Speaker 2: and he was born 17th of October 2010. It was
1:59
Speaker 2: the home birth, which was, for me, I think it
2:02
Speaker 2: was quite a little bit traumatic actually. When you're trying
2:05
Speaker 2: to get the temperature right from a pool in your
2:08
Speaker 2: sitting room with a hose pipe from your upstairs tap
2:11
Speaker 2: to get the temperature right in the pool is also,
2:13
Speaker 2: is a very stressful situation anyway. But Paddy was born
2:17
Speaker 2: with the cord around his neck, which was, when he
2:22
Speaker 2: came out, was kind of had to be revived on
2:25
Speaker 2: the kitchen counter. I remember seeing the... the nurses, the midwives,
2:31
Speaker 2: just doing that. And that was like, that stuck with
2:33
Speaker 2: me to start with. So already, from the off, it
2:36
Speaker 2: was quite like, oh my God, what's going on? He
2:39
Speaker 2: came around absolutely fine. And then noticed straight away Paddy
2:44
Speaker 2: had six toes on each foot. So it was polydactyl
2:48
Speaker 2: is the term. Later on, had to get those removed
2:51
Speaker 2: at 18 months because they were like, oh, that's absolutely fine.
2:54
Speaker 2: So he could either go through his life having specially
2:56
Speaker 2: made shoes or they could operate and then get him
2:59
Speaker 2: into normal shoes. So that happened like 18 months later,
3:02
Speaker 2: because trying to keep a, well, yeah, 18 months later
3:07
Speaker 2: when he was like, well, that age, keeping a toddler
3:10
Speaker 2: off their feet was not easy, and that was quite
3:13
Speaker 2: a challenge in itself. But the main thing was the
3:17
Speaker 2: Hirschsprung's disease that came along, because after about two days,
3:22
Speaker 2: the midwives noticed that he hadn't, had meconium the first
3:27
Speaker 2: stool and but it wasn't really feeding properly hadn't latched
3:32
Speaker 2: on we thought or suspected that was to do with
3:35
Speaker 2: a tongue tie because his elder brother also had a
3:38
Speaker 2: tongue tie when he was born which was correct he
3:41
Speaker 2: did have a tongue tie so that needed sorting out
3:46
Speaker 2: but the he wasn't really feeding and the I think
3:53
Speaker 2: it was day three we got rushed in, we got taken,
3:56
Speaker 2: we were advised to go to the North Manchester General
4:00
Speaker 2: Hospital where a surgeon there had a look, saw his
4:03
Speaker 2: tummy was distended. Um, and I think he sort of
4:06
Speaker 2: thought straight away, there's something wrong here. So we were
4:09
Speaker 2: really lucky that he was kind of caught and we're
4:11
Speaker 2: in a sort of, um, area. So in North Manchester, um,
4:15
Speaker 2: there's lots of like specialists in this area that kind
4:18
Speaker 2: of clocked the Hirschbron's, even the midwives were suspecting it. And, um,
4:24
Speaker 2: they rushed us into hospital at the children's hospital in
4:28
Speaker 2: south manchester which was um and they kind of found
4:33
Speaker 2: that this was suspected to be her from so straight
4:35
Speaker 2: into uh the um intensive care unit and the surgeons
4:41
Speaker 2: came along like yeah this definitely looks like her springs
4:44
Speaker 2: and then sort of day four um he was rushed
4:47
Speaker 2: into a surgery um and they um I'm trying to
4:54
Speaker 2: get my notes right in order here. I shouldn't have
4:56
Speaker 2: organised that before I came. But he basically was operated
5:02
Speaker 2: on on day four. They found that there was sort
5:04
Speaker 2: of three perforations in his bowel where it had kind
5:08
Speaker 2: of basically exploded. So there was a danger of sepsis
5:11
Speaker 2: at that point. So they had to go in, clean
5:13
Speaker 2: all up, stitch up the bowel and take the samples,
5:17
Speaker 2: find out exactly what the diagnosis was, even though it
5:20
Speaker 2: was suspected. And Yeah, it was a very sort of
5:26
Speaker 2: traumatic time. I guess you kind of go into shock
5:29
Speaker 2: a little bit, really. You're kind of like, what is
5:30
Speaker 2: going on? You're in this new environment. And it was
5:36
Speaker 2: quite a lot. I remember when there was a nurse
5:40
Speaker 2: or a sort of student nurse came into the ICU
5:43
Speaker 2: when Paddy was a newborn baby with these tubes and everything,
5:46
Speaker 2: and her face was in shock. When you see that,
5:50
Speaker 2: she's like... It's like, oh God, so it's that bad,
5:53
Speaker 2: is it? And you don't really realise when you sort
5:56
Speaker 2: of see that. But I remember Dr Khalil, who was
6:01
Speaker 2: the surgeon at the time, who took on Paddy's case,
6:03
Speaker 2: he just put his hand on my shoulder and was like,
6:05
Speaker 2: don't worry, we're going to take good care of your son.
6:07
Speaker 2: And that was like really reassuring, like absolutely amazing at
6:11
Speaker 2: the hospital. I remember we stayed over that night. There
6:15
Speaker 2: was only one bed. I think it was a Ronald
6:17
Speaker 2: McDonald house that we stayed in. So I remember sleeping
6:21
Speaker 2: on the cold floor while Paddy's mum had the bed
6:25
Speaker 2: and he was in operation for about seven or eight
6:28
Speaker 2: hours that night, which is, you know, feels like a really, well,
6:32
Speaker 2: it is a long time, you know, to be under
6:34
Speaker 2: surgery when you're a newborn baby. But they were doing
6:36
Speaker 2: that to be extra careful and making sure that they
6:40
Speaker 2: were doing everything correctly. So, yeah, straight off the back,
6:45
Speaker 2: really quite traumatic experience. And then even, I think it
6:49
Speaker 2: was a few days later, the doctor who sort of
6:51
Speaker 2: clubbed it at the North Manchester General Hospital where we
6:54
Speaker 2: first went, he phoned us up asking how Paddy was
6:57
Speaker 2: because he was really concerned. And I thought that was
6:59
Speaker 2: really lovely. Like, he didn't have to do that. And
7:01
Speaker 2: it's like, he just wanted to check on him. So
7:03
Speaker 2: that was really quite a nice thing. But also on reflection,
7:07
Speaker 2: sort of adds to how serious it was, you know.
7:10
Speaker 2: And yeah, so after the surgery, the biopsies were taken.
7:15
Speaker 2: And they were 95% sure it was HD. And they
7:18
Speaker 2: got the results back on the 1st of November. And
7:21
Speaker 2: it was confirmed that it was long-section hair sprungs. And
7:24
Speaker 2: during the operation, he also had the tongue tie. And
7:26
Speaker 2: we sort of mentioned that. And the surgeon said, oh,
7:28
Speaker 2: I had great satisfaction in getting rid of that tongue tie.
7:31
Speaker 2: So he sort of snipped that so he could feed
7:33
Speaker 2: properly when he came around. And they also found that
7:37
Speaker 2: he was a cystic fibrosis gene carrier.
7:39
Speaker 3: Yeah.
7:41
Speaker 2: And there was sort of like early signs of things.
7:44
Speaker 2: So when he was in the womb, there was like
7:47
Speaker 2: a slightly larger nuchal measurement on his neck, which is
7:55
Speaker 2: like a measurement they sort of look at. And it's
7:58
Speaker 2: quite common with Down syndrome babies. And they're sort of
8:02
Speaker 2: like a marker. And so that was there. But they
8:06
Speaker 2: said it was probably, it's not like, way out or
8:09
Speaker 2: anything but it's a little bit wider so I often
8:12
Speaker 2: sometimes think is that maybe like an early sign of
8:15
Speaker 2: something that's not quite right there so that was quite
8:20
Speaker 2: interesting then basically time went on and Paddy had his
8:28
Speaker 2: transanal pull through on the 20th of January they found
8:33
Speaker 2: out once they'd done the main surgery they took out
8:38
Speaker 2: most of his colon so he only had 15 centimeters
8:40
Speaker 2: left uh i think the usual length for like newborns
8:44
Speaker 2: is about 50 centimeters so um he was quite a
8:49
Speaker 2: lot taken out so there's not much colon left at
8:52
Speaker 2: all and um you know so two major operations there
8:58
Speaker 2: that he have which has sort of created the scars
9:00
Speaker 2: on his tummy today which is a big line across
9:02
Speaker 2: his tummy um then um for me i think coming
9:09
Speaker 2: on this podcast like i've heard um lots of males
9:13
Speaker 2: come on and men talk about their own experiences people
9:15
Speaker 2: with hurt springs like yourself tom um but for a
9:20
Speaker 2: dad being like sort of helping doing the back and
9:23
Speaker 2: forth picking up the clothes bringing in the food to
9:25
Speaker 2: the hospital because you know most people know hospital food's
9:28
Speaker 2: awful and um all of that kind of stuff it's
9:32
Speaker 2: like those sort of journeys are really quite stressful and
9:35
Speaker 2: it's like usually late at night and From a sort
9:38
Speaker 2: of dad's point of view, I don't think that's really
9:40
Speaker 2: talked about very much. So it's quite nice to kind
9:43
Speaker 2: of just be able to come through this. So the
9:52
Speaker 2: other thing as well, looking after Joe at home, his
9:55
Speaker 2: older brother, and kind of keeping um that on the
9:59
Speaker 2: and we did sort of share it you know don't
10:01
Speaker 2: get me wrong like um his paddy's mum was kind
10:03
Speaker 2: of going back home as well and i was sort
10:05
Speaker 2: of staying over after the sort of major operations had
10:08
Speaker 2: finished um but yeah just being really tired at the
10:13
Speaker 2: time so a lot of it was quite a blur
10:16
Speaker 2: um Me and Paddy's mum at the time were running
10:18
Speaker 2: a restaurant and with two young children, that was like
10:22
Speaker 2: adds to the tired. So it's like really like next
10:26
Speaker 2: level tired. I had to write a lot of this
10:29
Speaker 2: stuff down to try and get it back in my
10:31
Speaker 2: head what was going on because it was just like
10:33
Speaker 2: a complete blur really. So when they did the pull
10:40
Speaker 2: through and they did some sort of stimulation test, electrical tests,
10:46
Speaker 2: to see if there was a possibility that Paddy could
10:49
Speaker 2: train himself to become constant later on in life. And
10:51
Speaker 2: they found like early signs that that might work. So
10:54
Speaker 2: there was like a little bit of hope there. And
10:57
Speaker 2: there was some contractions in the anus amongst the scar tissue.
11:00
Speaker 2: So they thought, okay, there's maybe something that could go
11:03
Speaker 2: on here. So that was something that he might be
11:07
Speaker 2: able to train his body to do while he was
11:09
Speaker 2: going through potty training.
11:10
Speaker 3: So....
11:14
Speaker 2: First of all, had the pull through done once they'd
11:15
Speaker 2: taken out the bowel that wasn't working. And then they,
11:21
Speaker 2: because he had a stoma on at that point. So
11:24
Speaker 2: between that time he had a stoma attached as a
11:27
Speaker 2: little baby. And that was our first introduction to stoma bags.
11:31
Speaker 2: And being a baby with all this stuff coming out,
11:35
Speaker 2: it was so acidic. It really tore up his skin
11:39
Speaker 2: on his tummy. And there was like nothing you could
11:42
Speaker 2: do because if it gets too wet and too bloody,
11:44
Speaker 2: then you can't put a bag on. So it's just
11:47
Speaker 2: like a constant battle. It was really awful. So that
11:51
Speaker 2: was not a nice thing to do. So they closed
11:55
Speaker 2: the stoma and were like, right, okay, hopefully this is
11:57
Speaker 2: going to work and let the pull through, see what happens.
12:02
Speaker 2: Then it was, yeah, that was like a really traumatic.
12:08
Speaker 2: So it was like another, two half years or so
12:12
Speaker 2: trying to be potty trained paddy allowing his body to
12:16
Speaker 2: sort of adapt to what happened and it was just
12:20
Speaker 2: not happening and we were going through like 18 to
12:22
Speaker 2: 20 nappies a day trying to keep on top of
12:25
Speaker 2: the output that was coming out of his bottom and
12:28
Speaker 2: it was again doing the same thing so there's a
12:30
Speaker 2: lot of like raw skin I've heard about people talking
12:33
Speaker 2: about a lot with sort of long section Hirschsprung's disease
12:37
Speaker 2: and the skin was just red raw and that's how
12:42
Speaker 2: we knew he needed a nappy changing because he would
12:45
Speaker 2: cry and we're like oh right some more poo's come
12:49
Speaker 2: out we need to change it at one point we
12:52
Speaker 2: were in a ward in Manchester Children's Hospital and there
12:58
Speaker 2: was this cream that the ward had got hold of
13:01
Speaker 2: it was a new cream at the time called Ilex
13:04
Speaker 2: and they gave us a tube and it was an
13:05
Speaker 2: absolute miracle cream it really helps we managed to kind
13:08
Speaker 2: of use that but it wasn't available on the um
13:12
Speaker 2: on the nice list and so um it was kind
13:17
Speaker 2: of coming through I think and as usual I think
13:20
Speaker 2: kind of Scotland managed to approve it first and then
13:22
Speaker 2: England like so many things that I hear so far
13:26
Speaker 2: behind trying to approve just basics medicines um so my
13:31
Speaker 2: dad got on the case because he loves to write
13:33
Speaker 2: a letter to the MP and he uh He wrote to, like,
13:37
Speaker 2: the local MP and the government, Department of Health, and
13:41
Speaker 2: really got on the case and managed to push this
13:44
Speaker 2: Illex through. And so we could get hold of it
13:48
Speaker 2: without spending a fortune trying to buy it privately. And
13:52
Speaker 2: me and Paddy's mum, the restaurant that we owned, we did, like,
13:56
Speaker 2: a fundraising dinner with our ex-colleagues from the Fat Ducket,
14:03
Speaker 2: which is Heston Bloomingdale's pub at the time, restaurant at
14:06
Speaker 2: the time. We had some people that we knew well,
14:08
Speaker 2: so we got them up and we all did a
14:09
Speaker 2: course each, raised a load of money, bought a whole
14:11
Speaker 2: load of LX and gave it to the ward that
14:15
Speaker 2: we got it from as a sort of nice thing
14:18
Speaker 2: for others to get hold of because trying to get
14:22
Speaker 2: products out and recommend products to people is part of
14:26
Speaker 2: the parcel and we struggled finding out about stoma products
14:30
Speaker 2: and all sorts of things throughout Paddy's life. And yeah,
14:35
Speaker 2: I think... You know, we had the usual sort of
14:39
Speaker 2: looking out for the ontracolitis in the gut and, you know,
14:42
Speaker 2: making sure he got the antibiotics when he needed, those
14:45
Speaker 2: early signs. I think a lot of people talk about that.
14:48
Speaker 2: And it's, you know, we had, luckily, we had Paddy's
14:54
Speaker 2: mum's auntie and uncle who were quite close by, helping
14:58
Speaker 2: us out with childcare quite a lot because Paddy's grandparents...
15:04
Speaker 2: on his mum's side, were living in France at the time.
15:06
Speaker 2: Mine were living in Wiltshire, so they weren't as close. And,
15:08
Speaker 2: you know, they did come and help, but having sort
15:10
Speaker 2: of family close by was really helpful. So that was,
15:17
Speaker 2: you know, really great. Then I think after all of
15:25
Speaker 2: this wasn't working, they reformed the ileostomy around 2014, sort
15:30
Speaker 2: of September time. because of how bad the skin was,
15:33
Speaker 2: you couldn't keep it under control. And it was, you know,
15:35
Speaker 2: it wasn't, it wasn't working at all. And it was
15:38
Speaker 2: sort of just before, um, you went to school. I
15:40
Speaker 2: think that was about right. Wasn't it? So they reversed
15:44
Speaker 2: the stoma, put the stoma back on and, uh, the
15:48
Speaker 2: ileostomy was formed and he had the mucous fistula as well,
15:51
Speaker 2: which is the sort of disused valve on the tummy, um,
15:56
Speaker 2: which is still got today. And, um, yeah, I just, uh,
16:02
Speaker 2: one thing I remember when Paddy was in and out
16:05
Speaker 2: of hospital, um, I remember coming home one evening and
16:09
Speaker 2: like Joey's older brother just started to cry just out
16:12
Speaker 2: of nowhere. And he was saying he was worried about
16:15
Speaker 2: Paddy out, you know, and that sort of stuff really
16:18
Speaker 2: breaks your heart. And I just like, you know, you
16:20
Speaker 2: feel the same, but you've just got to sort of
16:21
Speaker 2: comfort these, you know, Joe and get on with it really. Um, So,
16:29
Speaker 2: you know, there's that side of it as well. It's
16:31
Speaker 2: like the siblings are involved as well as Paddy going
16:34
Speaker 2: through what he was going through. So, yeah, there was
16:41
Speaker 2: the other part of it was when we were kind
16:44
Speaker 2: of the bag went back on and Paddy was sort
16:48
Speaker 2: of being toilet trained at the time. But with the
16:52
Speaker 2: nappies that he was going through, that was also infecting
16:55
Speaker 2: him and going for a week. So that was also
17:00
Speaker 2: sort of becoming painful because of all the stool just
17:04
Speaker 2: getting everywhere in the nappy. So just going for a
17:07
Speaker 2: wee was becoming painful as well because he was getting infected.
17:10
Speaker 2: So the whole sort of toilet experience of Paddy being
17:12
Speaker 2: a toddler was just like awful. So to the point
17:17
Speaker 2: where he wouldn't go for a wee at all. We
17:20
Speaker 2: had to take him into hospital and try everything. So
17:23
Speaker 2: he was going into sort of hot baths and, you know,
17:26
Speaker 2: running water and just wouldn't go. And it got to
17:29
Speaker 2: the point where if he didn't go, his bladder was
17:35
Speaker 2: kind of seeping back up to his kidneys and has
17:38
Speaker 2: now got kidney damage because it got so serious. Because
17:41
Speaker 2: it was almost going back up into sepsis. So he
17:43
Speaker 2: had to get a catheter put in to get the
17:45
Speaker 2: wee out. And that was, for me, one of the
17:47
Speaker 2: most traumatic hospital moments. I think that's probably our earliest memory,
17:52
Speaker 2: isn't it? It is.
17:54
Speaker 4: So that and then when I was about three coming
17:57
Speaker 4: home from hospital and being in a lot of pain.
17:59
Speaker 1: Yeah.
17:59
Speaker 2: Is what I remember.
18:01
Speaker 3: Yeah.
18:01
Speaker 2: And that's probably when they put the... It probably won.
18:04
Speaker 2: They put the stoma back on. And because we had
18:07
Speaker 2: to like, because he was just, we had to sort
18:09
Speaker 2: of almost hold him down while they were putting the
18:11
Speaker 2: catheter in. Because he was like that serious. And there's
18:14
Speaker 2: like me and another doctor and then someone else trying
18:16
Speaker 2: to catheterize Paddy. And I was just like kind of
18:20
Speaker 2: in shock holding him. And I was like, they'd done
18:22
Speaker 2: it and it was all coming on. And Paddy was like,
18:24
Speaker 2: why are you still holding me? And I was like,
18:27
Speaker 2: I don't know. You know, it just got to that
18:29
Speaker 2: moment where you just kind of like, it's just crazy. Um,
18:34
Speaker 2: so yeah, the whole sort of toilet training part of
18:40
Speaker 2: Paddy's life was, didn't go smoothly at all, you know? Um,
18:45
Speaker 2: but they, um, So he's still now under consultants every year,
18:50
Speaker 2: checking that his kidney function is okay. And it's quite
18:55
Speaker 2: weak on one side, but it's okay. It's just like
18:58
Speaker 2: being monitored for his life kind of thing. It's like
19:03
Speaker 2: an acute kidney injury, they call it. So then Dr. Khalil,
19:12
Speaker 2: his main surgeon, left to go back to Egypt. at
19:16
Speaker 2: the RMCH and his new consultants didn't quite understand how
19:22
Speaker 2: complex Paddy's case was so we asked to be transferred
19:25
Speaker 2: to Alder Hay Hospital which has been mentioned a number
19:28
Speaker 2: of times on this podcast and it is wonderful, it's
19:31
Speaker 2: really good they know what we're doing, we're under Miss
19:35
Speaker 2: Holman there who took care of him from that point
19:37
Speaker 2: on and is still a consultant now and then the
19:42
Speaker 2: stoma change at kind of came along, it was challenging
19:49
Speaker 2: because we were having to do it all the time
19:50
Speaker 2: for paddy at that age obviously and he went into
19:53
Speaker 2: primary school with a stoma bag and the school was
19:56
Speaker 2: very much like oh we don't know what to do
19:57
Speaker 2: with this you have to come in and change it
19:59
Speaker 2: so for the first month or two we were getting
20:03
Speaker 2: called in regularly to change his bag which was insane
20:06
Speaker 2: and it was um There was one teacher, Miss Sullivan,
20:11
Speaker 2: wasn't it? Yeah, who was just kind of stepped forward
20:14
Speaker 2: and said, well, why don't you show me what's going
20:16
Speaker 2: on and we'll see if we can do it. And
20:18
Speaker 2: as soon as they realised that it's basically like taking
20:21
Speaker 2: off a plaster and putting a plaster on, which is
20:23
Speaker 2: kind of the case, and people who haven't seen stoma
20:27
Speaker 2: bags or know about them, you know, they're kind of like, well,
20:30
Speaker 2: how's it work? What's going on? And as soon as
20:32
Speaker 2: they see it, they're like, oh, that's really easy, actually,
20:34
Speaker 2: because they expect there might be some, like, tubes and
20:36
Speaker 2: syringes involved and all this kind of thing. And the
20:39
Speaker 2: whole sort of stigma around it, it seems like, oh,
20:41
Speaker 2: it must be more complicated. And it is mad. It's
20:44
Speaker 2: like your intestine's sticking out of your tummy, isn't it?
20:47
Speaker 4: Yeah.
20:49
Speaker 2: And I think once she realised, she sort of took
20:53
Speaker 2: it upon herself to really look after Paddy, which meant
20:55
Speaker 2: we didn't have to go in. But it took for
20:57
Speaker 2: that person to take that on with the right sort
21:01
Speaker 2: of safeguarding around it. So she really was great, wasn't she? Yeah,
21:09
Speaker 2: I think the school, because whilst we're going through this,
21:15
Speaker 2: we realised that Paddy was potentially, had autism, my uncle
21:19
Speaker 2: has autism. And I think we sort of clocked it.
21:23
Speaker 2: So like, right, we need to get this assessed. And
21:25
Speaker 2: it took us eight years to get it properly diagnosed.
21:28
Speaker 2: But luckily we had, I think the deputy head teacher,
21:32
Speaker 2: Karen Edwards, was massive help because she used to work
21:37
Speaker 2: with the, send team in in berry where the borough
21:40
Speaker 2: that we're in so she knew how to fill out
21:42
Speaker 2: the forms properly and advocate to get paddy the right
21:45
Speaker 2: plan that he needed so by the time he was
21:48
Speaker 2: getting towards the end of primary school and going into
21:51
Speaker 2: secondary school he had like a an ehcp plan an
21:54
Speaker 2: educational health care plan in place um which was really
21:58
Speaker 2: really helpful for transferring getting the right care that he
22:01
Speaker 2: needed for the rest of his school life and um
22:06
Speaker 2: Eventually got the diagnosis of autism and then that also
22:11
Speaker 2: led to a diagnosis of dyslexia, didn't it? So you've
22:14
Speaker 2: had all the things. And then I think a bit
22:20
Speaker 2: later on, once we got back into Alderhey, they ran
22:24
Speaker 2: some tests to see if there was any more plans
22:30
Speaker 2: that we could do. Perhaps the thing settled down. Maybe
22:33
Speaker 2: we could look at another pull through or something like that.
22:37
Speaker 2: but they did the electrolysis test again to see if
22:40
Speaker 2: anything was working, and they couldn't find it. All the
22:42
Speaker 2: scar tissue that had built up, there was no sort
22:46
Speaker 2: of sign of anything, so it was at that point
22:48
Speaker 2: that he was probably going to have a stoma permanently
22:51
Speaker 2: for the rest of his life, really. There's not a
22:53
Speaker 2: lot they can do. And they put the sort of
23:00
Speaker 2: dye down his mucous fistula to check that out. So... Yeah,
23:05
Speaker 2: it's been a whole world. And, you know, through all
23:06
Speaker 2: of this, there was like the dilatations that people talk
23:09
Speaker 2: about when the scar's healing up, which is, you know,
23:12
Speaker 2: an awful thing to have to do to anyone. We
23:15
Speaker 2: eventually took him into hospital to do them at the
23:17
Speaker 2: later stages because he couldn't do it. It just felt
23:19
Speaker 2: like torture, like you're torturing your own kid. And that
23:23
Speaker 2: was not a nice thing. I don't think you remember that,
23:25
Speaker 2: do you?
23:26
Speaker 4: No.
23:28
Speaker 2: And then there was.
23:29
Speaker 3: Yeah.
23:31
Speaker 2: Yeah. So just awful. The most recent thing that's happened
23:35
Speaker 2: to Paddy is the sort of diversion colitis, which has
23:40
Speaker 2: happened in his mucous fistula. So that's kind of where
23:43
Speaker 2: the mucous fistula is, the bowel that's not being used,
23:47
Speaker 2: is kind of sort of breaks down or it might
23:49
Speaker 2: get infected and it creates this like colitis inside. So
23:53
Speaker 2: he's had to have these.
23:57
Speaker 2: Washouts which include sort of a first of all it
24:00
Speaker 2: was like an antibiotic to get rid of the colitis
24:03
Speaker 2: and then they used like a trans fatty acid which
24:05
Speaker 2: sort of regenerates the disused bowel to kind of regenerate
24:11
Speaker 2: it and to stop this kind of excretion which is
24:15
Speaker 2: quite sort of foul smelling and hard to deal with
24:18
Speaker 2: and it's been quite tough that hasn't it Paddy the
24:20
Speaker 2: last sort of year now really I suppose yeah And
24:25
Speaker 2: so certainly been through the mill. So on top of
24:30
Speaker 2: like having his tonsils removed, his toe removed on both
24:34
Speaker 2: feet and general other sort of under anaesthetic concerns, he's
24:38
Speaker 2: probably had about six, seven, eight procedures over that time,
24:42
Speaker 2: which I know is not as many as some others actually,
24:45
Speaker 2: but it's all relative, isn't it? And then, yeah, sort
24:49
Speaker 2: of leading into my life last year, I got a
24:53
Speaker 2: brain tumour. and um that was life-changing for me so
24:57
Speaker 2: we're both now in the rare disease club and uh
25:01
Speaker 2: um my wife Kerry has got um an endometriosis as
25:07
Speaker 2: well so there's like we're sort of a household full
25:09
Speaker 2: of sort of rare conditions and um yeah it's uh
25:15
Speaker 2: it's been a really interesting time so I'm kind of
25:18
Speaker 2: doing a Reiki baker. I'm a Reiki master, so I'm
25:21
Speaker 2: very holistic and I go into sort of using that
25:24
Speaker 2: as a way of my own healing and as a
25:27
Speaker 2: chef growing up of sort of doing these well-being courses,
25:30
Speaker 2: teaching people how to make sourdough now. And it's, yeah,
25:35
Speaker 2: between us, we're sort of doing all right. But I
25:39
Speaker 2: think it'd be good from your point of view, just
25:41
Speaker 2: for Paddy, I think it'd be nice for him to
25:43
Speaker 2: meet an autistic teenager with a stoner bag, which is
25:47
Speaker 2: quite a rare combination. And I think it'd be nice
25:50
Speaker 2: to sort of.
25:52
Speaker 4: Because basically the only other person that I know has
25:55
Speaker 4: a bag is my older uncle called Danny. Um, but
25:59
Speaker 4: he has pros, not Hirschsprungs, but that's the only other
26:02
Speaker 4: person that I know has Hirschsprungs or like a bag.
26:08
Speaker 2: So seeing the, um, Hirschsprungs awareness charity getting charity status
26:12
Speaker 2: this month during Hirschsprungs awareness month, which is amazing. I'm hoping.
26:17
Speaker 2: that'll bring the community a bit closer together and being
26:20
Speaker 2: able to sort of seek out more help groups. Because
26:23
Speaker 2: I think at the start, I've really shied away from
26:25
Speaker 2: talking about it when in the early stages, because it's
26:29
Speaker 2: quite traumatic and you'd see the sort of Facebook groups
26:32
Speaker 2: and it's all just doom and gloom. And it's quite
26:35
Speaker 2: intense when you look at those pages to start off with.
26:39
Speaker 2: So I feel personally, I feel now I'm all ready
26:43
Speaker 2: to open up, talk about it, try and find others
26:46
Speaker 2: in the community. just to help because there's not a
26:49
Speaker 2: lot of teenagers who come on and talk about their condition.
26:53
Speaker 2: A lot of babies are out there, toddlers, always wondering
26:56
Speaker 2: about what it would be like to have a life
26:59
Speaker 2: in school and, you know, from childcare to adult care.
27:02
Speaker 2: We're going through that transition right now. So when this
27:04
Speaker 2: podcast comes out, Paddy will be 60, really advocate him
27:07
Speaker 2: going into adult care from childcare, which I know you
27:11
Speaker 2: will probably know, Tom, is quite a difficult place to be.
27:16
Speaker 2: So that's where we're at in our life. But, you know,
27:19
Speaker 2: you've managed through school, you've had the right support. And,
27:22
Speaker 2: you know, it's not all bad. And in the story
27:25
Speaker 2: and the Hurstprungs, it's awful, like most people know about. But, yeah,
27:30
Speaker 2: what have you got to add to that, Paddy?
27:34
Speaker 4: Not a lot, really, pretty much. It's on there.
27:37
Speaker 3: Um, yeah.
27:39
Speaker 2: Um, yeah.
27:41
Speaker 4: I do also have, uh, asthmat as well as like
27:44
Speaker 4: add on to like everything else.
27:46
Speaker 2: Yeah, that's true.
27:47
Speaker 4: Um, everything just piles on and on and on. I was,
27:51
Speaker 4: that is pretty good. Yeah.
27:52
Speaker 2: It's quite a, quite a lot for a teenager to
27:54
Speaker 2: take on, isn't it?
27:56
Speaker 4: Absolutely.
27:57
Speaker 1: And, and that's, yeah, one, one heck of a story. Um,
28:01
Speaker 1: I mean, the first thing he said that, you know,
28:05
Speaker 1: You said you were born in 2010. 2010, in my mind,
28:08
Speaker 1: is like five years ago. So it's still wild to
28:11
Speaker 1: me that people are born in.
28:12
Speaker 2: 2010 and are now nearly 16.
28:14
Speaker 1: So, yeah, that kind of messes with my brain a
28:18
Speaker 1: little bit. But you said some really interesting bits and
28:23
Speaker 1: pieces there. Number one is something that I really want
28:28
Speaker 1: for this podcast as well. I mean, I love having
28:32
Speaker 1: every Hirschsprung story. older, younger, in the middle, but I
28:37
Speaker 1: don't have a lot of dads who come on. So
28:41
Speaker 1: to have another dad's perspective, I think is so, so
28:46
Speaker 1: important because like you said, there's a lot of late
28:51
Speaker 1: night trips here, there, and everywhere that really don't get
28:57
Speaker 1: shared maybe as much as they should. So I think
29:00
Speaker 1: you coming on and saying, right, actually, yes, this is
29:03
Speaker 1: what I was doing and this, that, the other, I
29:05
Speaker 1: think is really, really important to share, to shine a
29:10
Speaker 1: light on. Because like you said, it's a partnership, isn't it?
29:15
Speaker 1: It's not down to one person. Whether one parent is
29:21
Speaker 1: working whilst the other one's at hospital, whether one's doing
29:25
Speaker 1: the trips here and there, it's, it's very often a partnership.
29:30
Speaker 1: And I think that's, that's really important to shine a
29:33
Speaker 1: light on.
29:34
Speaker 2: Yeah, definitely. It's, um, yeah. And, you know, uh, I,
29:40
Speaker 2: would be nice to be that voice for other dads
29:43
Speaker 2: out there who are dealing with it because obviously the
29:45
Speaker 2: focus is on keeping your child as healthy as possible,
29:49
Speaker 2: making sure they're getting the right treatment and they're coming
29:52
Speaker 2: home and back and forth, back and forth. We were
29:55
Speaker 2: in a very lucky position where we didn't live a
29:57
Speaker 2: million miles away from the hospitals. So when you're driving
30:00
Speaker 2: late at night, it was actually like a sort of
30:04
Speaker 2: 25-minute journey, whereas during the day that might have been
30:07
Speaker 2: 45 minutes to an hour. But, yeah, I think you've
30:11
Speaker 2: just got to get through. You've just got to do
30:13
Speaker 2: what you do. And I think just from, I think
30:17
Speaker 2: food is actually a really big part of it. So
30:20
Speaker 2: we're trying to get healthy food. You know, I mean,
30:22
Speaker 2: Paddy is 6'1 now and thriving. And a lot of
30:25
Speaker 2: the things that people say about Hirschsprungs is, oh, your
30:27
Speaker 2: child might not grow to be sort of a regular
30:31
Speaker 2: height for their age or whatever it might be. And,
30:35
Speaker 2: you know, a paddy is proof that that is not
30:36
Speaker 2: the case. And I think if you've got, like, good care,
30:40
Speaker 2: good health around you and the tongue tie getting the
30:43
Speaker 2: right sort of milk, you know, the breast milk at
30:46
Speaker 2: the right time and all that kind of stuff, I
30:48
Speaker 2: think it would help massively.
30:49
Speaker 3: So.
30:52
Speaker 2: there's that side of it and then from my point
30:54
Speaker 2: of view just with the siblings that are at home
30:57
Speaker 2: and you know help with work and you know it
31:00
Speaker 2: wasn't all just me doing that like when I could
31:03
Speaker 2: we'd swap over and obviously it's not good for the
31:06
Speaker 2: mother to be in hospital all the time either because
31:09
Speaker 2: that can be overwhelming and there's lots of people said
31:12
Speaker 2: oh there's always other people in the hospital who are
31:14
Speaker 2: worse off than you and which is true you hear
31:16
Speaker 2: people in the beds next to you like in really
31:19
Speaker 2: bad situations but at the end of the day, it's like,
31:22
Speaker 2: it's your world, it's your bubble. You need to focus
31:24
Speaker 2: on that. And it is, it's definitely, um, you know,
31:28
Speaker 2: valid that you are having a really horrible time with
31:32
Speaker 2: it and that's okay. You know, I mean, it's not okay,
31:35
Speaker 2: but it's like, it's, it's, it's relative to you. So
31:39
Speaker 2: even though things can be worse and that's a good
31:40
Speaker 2: way of sort of like a good coping mechanism, uh,
31:44
Speaker 2: it's okay to reach out and ask for help. I mean, particularly,
31:47
Speaker 2: The stoma care side of things I found really difficult
31:50
Speaker 2: because of where Paddy's scar is. Like, bags wouldn't stick properly.
31:53
Speaker 2: And even today, you're going through a number of bags
31:57
Speaker 2: and trying to find the right products that are out there.
32:00
Speaker 2: I found that really difficult. And still now, it's really
32:03
Speaker 2: difficult to get hold of the right things that work. So, yeah. Yeah,
32:09
Speaker 2: I think as a dad, you always want to help
32:11
Speaker 2: more than you perhaps can. And you feel a bit
32:14
Speaker 2: guilty that you can't do as much. because it's kind
32:16
Speaker 2: of out of your hands a little bit. But you can,
32:19
Speaker 2: you can certainly advocate and you can certainly push for,
32:22
Speaker 2: you know, getting people to come out. I think when
32:25
Speaker 2: my biggest piece of advice is when you, if you've
32:27
Speaker 2: got a child with a stoma and the stoma nurses
32:31
Speaker 2: are checking in and make, you know, like, oh, is
32:33
Speaker 2: everything all right? Just like get them to give you
32:35
Speaker 2: the latest stoma products, get them to come out and
32:37
Speaker 2: assess your child. Like if you're struggling with the right products,
32:41
Speaker 2: because there's so many more out there, they'll always go
32:43
Speaker 2: with the basics first. and hope they work because they're
32:45
Speaker 2: the cheapest. But actually, if you push and push and push,
32:48
Speaker 2: they'll bring out the good stuff. And we've got there
32:50
Speaker 2: way too late with that, you know, because, like, we've
32:53
Speaker 2: got to a point where Paddy doesn't really trust the
32:56
Speaker 2: products now because nothing's really ever worked properly.
32:59
Speaker 1: Yeah.
33:00
Speaker 2: And, well, no, you just wanted to say.
33:04
Speaker 4: Recently, we came out with these new sprays, which are these.
33:09
Speaker 2: Deodorizers, which should be ages ago rather than the past
33:14
Speaker 2: couple of years.
33:15
Speaker 1: Yeah, yeah.
33:16
Speaker 4: It's ridiculous they haven't sold us anything about them.
33:18
Speaker 2: Yeah, exactly. So for Paddy going through school, obviously the
33:22
Speaker 2: smell is something that you're probably quite conscious of. And
33:25
Speaker 2: we only just discovered these deodorizing, neutralizing sprays that you
33:28
Speaker 2: can get hold of through prescription if you push hard enough.
33:34
Speaker 2: And they don't want to give them out or give
33:36
Speaker 2: that information, I think, because they're probably quite expensive. uh
33:39
Speaker 2: that's the way i sort of see it maybe there's
33:41
Speaker 2: a stoma nurse out there who want to correct me
33:43
Speaker 2: but uh it's like yeah uh it's stuff like that
33:49
Speaker 2: going through school which i think it's helped you i
33:51
Speaker 2: mean it's probably come a bit late hasn't it but
33:53
Speaker 2: you know it's um those little things to help become
33:57
Speaker 2: a bit more confident socially in.
34:00
Speaker 1: School yeah i i think that's a really really good
34:04
Speaker 1: point and i think when i had my stoma for uh.
34:11
Speaker 2: What was that? 13, 14 years, something like that.
34:14
Speaker 1: Something like that would have really, really helped me at
34:16
Speaker 1: the time because my stoma was, I had an ACE
34:19
Speaker 1: and that was very active. So to have something like that,
34:23
Speaker 1: I think that would have been, yeah, really, really beneficial.
34:26
Speaker 1: But I'm really glad you brought that up because there
34:28
Speaker 1: will be probably, there'll be a lot of people listening
34:30
Speaker 1: to this who have children who have stomas that will think, oh, actually,
34:33
Speaker 1: that might help my child now, that might help my
34:36
Speaker 1: child in the future. No, so that's, That's some really good,
34:40
Speaker 1: really good bit of info. And Paddy, if I could
34:42
Speaker 1: bring you in a sec. With Hirschsprungs, I know you
34:47
Speaker 1: talked a little bit about sort of when you were younger,
34:51
Speaker 1: but when did you sort of first realise that, oh, actually,
34:56
Speaker 1: I've got a rare condition that not many people have?
35:01
Speaker 4: For me, it's always been sort of like subconsciously that
35:07
Speaker 4: i that i know that this is very rare but
35:11
Speaker 4: in but in my mind i didn't really look at
35:13
Speaker 4: it that way i just looked at it as any
35:16
Speaker 4: other or not any other but as in i look
35:19
Speaker 4: at it um as it's this thing that i've got
35:24
Speaker 4: to deal with more than it's very rare but i
35:27
Speaker 4: do see it as very rare but it's more like
35:29
Speaker 4: a subconscious thing i think.
35:33
Speaker 2: It's easy to think they've got an age in mind
35:34
Speaker 2: where you sort of thought about it more or it
35:38
Speaker 2: was like a realization or do you think it was
35:40
Speaker 2: just a yeah i don't know just blended.
35:42
Speaker 4: I think it's blended with everything else that i have
35:45
Speaker 4: got going on i think because it's quite.
35:48
Speaker 5: Hard to be quite as locked yeah i was going
35:51
Speaker 5: to talk a little bit about that as well because
35:53
Speaker 5: it's it's not just you know her sprungs to deal
35:56
Speaker 5: with that there's there's all all manner of of conditions
36:00
Speaker 5: you seem to be sort of ticking the box.
36:02
Speaker 1: As you as you go.
36:05
Speaker 2: But how do you sort of.
36:08
Speaker 1: Daily, do you sort of think about, oh, I have
36:10
Speaker 1: to do this because it helps with this, or do
36:13
Speaker 1: this because it helps with this, or do you just
36:16
Speaker 1: not have to think of it like that?
36:18
Speaker 4: Well, with the bag, for school, I have my rucksack
36:23
Speaker 4: app to bag stuff. But then at school, when I
36:26
Speaker 4: go to school, apparently, I have this changing place where
36:30
Speaker 4: I go to change the bag and there's the, and
36:33
Speaker 4: I have this box of bag stuff, but I always
36:36
Speaker 4: have spare clothes and bags.
36:37
Speaker 2: For me anyway.
36:38
Speaker 4: So I know I've got that.
36:40
Speaker 1: Yeah.
36:40
Speaker 5: Yeah.
36:41
Speaker 1: Yeah.
36:42
Speaker 2: The school board speaking to the send team, the SEND team, um,
36:47
Speaker 2: is absolutely key for anyone who's going into school with
36:50
Speaker 2: stoma care and putting a plan in place, making sure
36:54
Speaker 2: that the teachers know And then, you know, there's like
36:56
Speaker 2: a toilet pass card available and all of that kind
37:01
Speaker 2: of stuff. And just knowing that, you know, for Paddy,
37:04
Speaker 2: he missed a lot of education in his early years.
37:06
Speaker 2: It was sort of quite formative. And there's a lot
37:10
Speaker 2: of that going on. So communication with those teams is
37:14
Speaker 2: absolutely key. So with Paddy and Phil, they had a
37:16
Speaker 2: really good area for sort of SEN kids to go to,
37:22
Speaker 2: which is what you used to get changed in, isn't it?
37:25
Speaker 2: And so, you know, that helps a lot having sort
37:28
Speaker 2: of all the clothes in all the right places if
37:32
Speaker 2: they need it. Definitely.
37:33
Speaker 1: And of course, now with the Hirschsprungs charity, we've now
37:38
Speaker 1: got essentially our own cards as well, which rather than
37:43
Speaker 1: having a sort of maybe generic card, we've now got
37:50
Speaker 1: sort of the Hirschsprungs. I don't know if you've got
37:52
Speaker 1: been sent those as well via the charity here.
37:55
Speaker 2: Did he get one? Yeah, we were at the conference
37:58
Speaker 2: at Great Ormond Street, so I think we got one there.
38:02
Speaker 4: Yeah, I think we got four of them for a
38:04
Speaker 4: lot of different things.
38:05
Speaker 2: Yeah, interesting. We were on Ben Jebbins' group for his
38:11
Speaker 2: research from Great Ormond Street. I know he spoke to
38:14
Speaker 2: Ben Jebbins on one of your podcasts. And that was
38:17
Speaker 2: really interesting, being part of that sort of focus group
38:20
Speaker 2: and learning about all the different types of Hirschsprungs. I
38:23
Speaker 2: had never heard of total colonic Hirschsprungs until that point.
38:25
Speaker 2: which is crazy. I've, you know, lived with this condition
38:29
Speaker 2: with Paddy for sort of 15 years and it's the
38:31
Speaker 2: first time it crops up. We're like, sorry, what is
38:33
Speaker 2: Tuk calling a curse rungs? And, you know, there's all
38:36
Speaker 2: the other different types. I know everyone's case is completely
38:40
Speaker 2: different and everyone always says that, which is very true.
38:43
Speaker 2: And that goes with any kind of rare disease condition.
38:46
Speaker 2: But yeah, just having that information I think really helps.
38:51
Speaker 2: And I wish I'd sort of known that earlier in
38:54
Speaker 2: some ways i think it made me feel in control
38:57
Speaker 2: of it a little bit more and somehow somehow i
38:59
Speaker 2: don't know why i think that but i think that
39:02
Speaker 2: information is key when it comes to like trying to
39:05
Speaker 2: deal with your own scenario in your own situation um
39:09
Speaker 2: trying to understand the condition as a whole um rather
39:13
Speaker 2: than battling through but that's hindsight it is it is
39:17
Speaker 2: i mean i've.
39:20
Speaker 1: Totally know where you're coming from with that you know
39:22
Speaker 1: for for 30 years I just thought Hirschsprungs is Hirschsprungs
39:25
Speaker 1: I just thought that's that's what it is I had
39:28
Speaker 1: no idea there were different types I had no idea
39:30
Speaker 1: you know things like skip segment as well where you
39:33
Speaker 1: can have a bit that's okay and then a bit
39:36
Speaker 1: that's not and a bit that's okay and a bit
39:37
Speaker 1: that's not I had no idea that existed.
39:40
Speaker 2: Yeah that's the first time I've heard about that one
39:42
Speaker 2: it's probably been mentioned but yeah.
39:45
Speaker 4: Yeah I knew about short segment but I didn't know
39:48
Speaker 4: about textual angle or like I don't think you can
39:50
Speaker 4: get it in the Ulrich. So that was good for
39:52
Speaker 4: me as well.
39:54
Speaker 2: Yeah, I had no idea there were at least six
39:57
Speaker 2: different types. And then within there, you've got people who.
40:00
Speaker 1: Have 60 centimetres or 65 centimetres. So even within the
40:06
Speaker 1: different types themselves, you've still got not everybody's the same,
40:10
Speaker 1: if that makes sense.
40:13
Speaker 2: The real hope with the research that those guys are
40:16
Speaker 2: doing as well, I think, Even in Paddy's lifetime, there
40:19
Speaker 2: could be a real cure for the cell transplants and
40:25
Speaker 2: things like that, or trials within humans anyway. Early signs
40:29
Speaker 2: are looking really promising, and understanding how that research is
40:34
Speaker 2: going is fascinating. So I think, fingers crossed, there could
40:39
Speaker 2: be more cures for people down the line. The other
40:43
Speaker 2: thing I'd like to mention as well for other parents
40:45
Speaker 2: out there, is sort of get a blue badge for
40:49
Speaker 2: your child. Yes. Especially if you're going on journeys like
40:53
Speaker 2: service stations, airports, things like that. Are you going to
40:57
Speaker 2: be able to get to a toilet quicker? Because one
41:00
Speaker 2: thing we've had and struggled, you know, in a radar
41:03
Speaker 2: key for disabled toilets and things like that, because you're absolutely,
41:08
Speaker 2: you know, allowed to have those and really important when
41:13
Speaker 2: you're going on a journey like that because... in a
41:15
Speaker 2: car or wherever for a long time, it can become
41:17
Speaker 2: a bit of a problem. So I'd definitely push for
41:21
Speaker 2: that if he didn't know. That's another thing I wanted
41:24
Speaker 2: to say. But out of everything, the main thing is
41:28
Speaker 2: that Paddy's thrived. He's, like I said, he's six foot
41:33
Speaker 2: one now and he's a really kind, funny, loving guy
41:37
Speaker 2: and will become a great adult. And so for those
41:42
Speaker 2: people who are wondering what he'd be like their child
41:46
Speaker 2: to become a teenager and go through school, I think
41:49
Speaker 2: it's nice to hear what Paddy's got to say about that.
41:52
Speaker 2: It's not without its troubles and its problems, but it
41:57
Speaker 2: is doable and everyone will be able to get through it.
42:00
Speaker 2: I think that's the main message. Absolutely.
42:04
Speaker 1: I think you're absolutely right with that and with the
42:09
Speaker 1: different things that we're entitled to as well. I think
42:11
Speaker 1: that's one of the aims of the new charity is
42:15
Speaker 1: to spread more awareness and to show us because again
42:18
Speaker 1: growing up I didn't know half the things I was
42:20
Speaker 1: entitled to that I'm now finding out that I was
42:24
Speaker 1: when I was younger but if you don't know you
42:26
Speaker 1: don't know it's it's one of those but now now
42:31
Speaker 1: with a lot more research and a lot more awareness
42:34
Speaker 1: hopefully we're now getting to the point where because like
42:38
Speaker 1: you said with the creams that they're not going to
42:40
Speaker 1: tell you if because some of it can be quite
42:43
Speaker 1: expensive so they're not going to sort of actively push
42:46
Speaker 1: as such and it'll be more kind of you having
42:49
Speaker 1: to do that research and having to sort of push
42:52
Speaker 1: yourself um but i guess as well just just finally
42:57
Speaker 1: i come back to you paddy um in terms of
43:00
Speaker 1: because obviously you're doing really well now um which is
43:03
Speaker 1: so so good to see having been through a whole
43:06
Speaker 1: heck of a lot let's be honest um But in
43:10
Speaker 1: terms of the future for you, what sort of Hirschsprungs
43:14
Speaker 1: and non-Hirschsprungs, what would you like to see?
43:22
Speaker 4: Each week I take it as it is. I just
43:26
Speaker 4: take each week as it is with the bag and
43:28
Speaker 4: stuff like that.
43:29
Speaker 2: You're going day to day with the bag out?
43:30
Speaker 4: Yeah.
43:31
Speaker 2: Because even now he's going through a couple of bags
43:33
Speaker 2: at least a day.
43:35
Speaker 3: It has diminished since the movement surgery, when bags have
43:41
Speaker 3: been moved to a different spot, so there's less crease
43:44
Speaker 3: where I put it on, which is better, but there's
43:47
Speaker 3: still a couple of mouldings.
43:49
Speaker 2: So I think with hair scrums, you're sort of pretty
43:51
Speaker 2: much day-to-day, week-to-week, aren't you?
43:53
Speaker 1: Yeah.
43:53
Speaker 2: In terms of management. But what about your, like, where
43:57
Speaker 2: do you see yourself in five years?
44:02
Speaker 4: Yeah, no, I don't know.
44:06
Speaker 2: We got your interest, haven't we?
44:07
Speaker 4: Yeah, I don't know whether I'll take them or.
44:11
Speaker 2: Not.
44:12
Speaker 4: No.
44:12
Speaker 2: See how it goes. Go with the flow. Yeah, we
44:15
Speaker 2: talked before we came on the podcast about Paddy's interest
44:18
Speaker 2: in photography and all that kind of thing. So that
44:21
Speaker 2: might be a pursuit that turns into a career. Who knows? But,
44:25
Speaker 2: you know, I think everyone finds their way. And also
44:27
Speaker 2: in school, I think you find your people, don't you?
44:29
Speaker 2: That's another point to make. Because you found a nice
44:32
Speaker 2: group of people. What, friends? Yeah, a friendly friend group.
44:36
Speaker 4: The way I've made friends in the past and in
44:38
Speaker 4: high school is I will speak to them and make them,
44:43
Speaker 4: but I won't talk about the bag until I know
44:47
Speaker 4: I can trust you properly, if that makes sense. So
44:50
Speaker 4: I won't talk about the bag until I know I
44:52
Speaker 4: can trust you properly.
44:53
Speaker 3: Yeah.
44:55
Speaker 2: Yeah, it does.
44:56
Speaker 1: No, that absolutely makes sense. Absolutely makes sense, but no.
45:00
Speaker 1: But thank you so much, guys, for coming on. It's
45:04
Speaker 1: been really, really good to chat to both of you and, yeah,
45:10
Speaker 1: to share your story, Paddy, and what a heck of
45:12
Speaker 1: a story it is. And, yeah, absolutely, and part of
45:16
Speaker 1: your story as well with your branching with Lawrence. And
45:20
Speaker 1: I hope the very best for, well, for both of you,
45:24
Speaker 1: both sort of health-wise and in the future. So thank
45:27
Speaker 1: you so much for coming on.
45:29
Speaker 2: Well, thanks very much for having us. Thank you.
45:34
Speaker 1: Thank you for listening and being part of this growing community.
45:38
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
45:41
Speaker 1: leave a review, and share it with someone who might
45:43
Speaker 1: need it. You can connect with us on social media
45:46
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirschsprungs Podcast.
45:52
Speaker 2: See you next week. Thank you.