Latest / Tom's Hirschsprung's Podcast / Episode 42 - With Samuel Bell

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Episode 42 - With Samuel Bell · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's Podcast, where I provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshprung's disease and sports.
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Speaker 2: Hello and welcome to episode forty two of Tom's Hirshprung's Podcast.
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Speaker 2: I've got a unique one for you today, and we'll
0:45
Speaker 2: find out why he's unique a little bit later on.
0:48
Speaker 2: But this week I am joined by firefighter and chairman
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Speaker 2: of Samuel Smiles, Samuel Bell. Welcome, Sam, Thank you very much.
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Speaker 3: Nath He theon heard and absolutly evolution is real for
1:00
Speaker 3: hospital podcast. So yeah, thank you very much for having
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Speaker 3: me on.
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Speaker 2: No problem, no problem at all, Thanks so much for coming.
1:06
Speaker 2: And we'll we'll get straight into it, but we will
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Speaker 2: talk about what Samuel Smiles is a little bit later
1:12
Speaker 2: on and how you fell into sort of being a
1:14
Speaker 2: fire fighter as well and your other jobs. But we'll start,
1:18
Speaker 2: if I may, from right from the beginning. So when
1:21
Speaker 2: you were diagnosed at but with total intestinal hirsh sprunks
1:27
Speaker 2: on total colonic is that correct?
1:29
Speaker 3: So it's actually more severe than total chronic so it's
1:33
Speaker 3: so basically it called total intestinal horsprung disease. So basically
1:37
Speaker 3: I have on nails in my intestinal track basically, so
1:40
Speaker 3: I've only got I think it's twelve centimeters are functioning bilve.
1:44
Speaker 3: So yeah, like I don't have a I don't have
1:47
Speaker 3: a colon, and I got taken out when I was
1:49
Speaker 3: like three or four, and then it's affected like the
1:52
Speaker 3: whole my whole small bile as well, So I have
1:54
Speaker 3: only twelve centimeters it works. So yeah, it's like the
1:58
Speaker 3: most severe case I prongs that I think you can get.
2:02
Speaker 2: Definitely, definitely I don't. I've learned over the last sort
2:07
Speaker 2: of eight nine months or so all of the different
2:11
Speaker 2: types of hirshprungs and whatnot. And still then I meet
2:14
Speaker 2: people and I go, oh, I still haven't heard of that.
2:18
Speaker 2: So I'm learning all the time. So it's great to
2:22
Speaker 2: have as bad as it might have been for you
2:25
Speaker 2: at times, it's great to have even more rare people
2:27
Speaker 2: because it means I learn a lot more and the
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Speaker 2: audience has a lot more. So it's bad for your suffering,
2:33
Speaker 2: I understand, but the rest of us learn a lot more. So,
2:36
Speaker 2: thank you, I guess in a way, So you were
2:42
Speaker 2: diagnosed at birth and then reading a lot of your
2:48
Speaker 2: articles which are in the Daily Record, and we'll talk
2:51
Speaker 2: a lot about those a little bit later on. You
2:54
Speaker 2: were given just three months to live? How did that
3:00
Speaker 2: sort of color bauts?
3:03
Speaker 3: So I would, but there be and in So basically,
3:08
Speaker 3: my mum's pregnancy was completely fine. So I have an
3:11
Speaker 3: older brother called Martin, so he's five year older than me,
3:14
Speaker 3: and he's completely healthy. So my mom's healthy, my mum's
3:20
Speaker 3: self and my brother's completely healthy. My dad had short
3:23
Speaker 3: segments her frongs when he was born, so he had
3:28
Speaker 3: a pool through procedure when he was still like a baby.
3:30
Speaker 3: I'm pretty sure that he had one of the first
3:33
Speaker 3: pool through the feedos in America when he was like
3:36
Speaker 3: a little young baby, So he obviously doesn't remember it,
3:40
Speaker 3: but he still like obviously got his scar and everthing.
3:43
Speaker 3: And so when they had Martin, he didn't know if
3:45
Speaker 3: her song could be passed down. And then Martin was healthy,
3:49
Speaker 3: so they didn't suspect anything. When they were having me,
3:51
Speaker 3: he could Martiners like they hadn't issued with Martin. And
3:55
Speaker 3: then when I was born, almost instantly, I just started
3:59
Speaker 3: like projectile and everywhere, and then my mom didn't really
4:02
Speaker 3: they didn't really know what was happening. So I was
4:05
Speaker 3: born in in for Clyde, which is a horspitlow and
4:08
Speaker 3: green Up, which was like it's not like the main
4:11
Speaker 3: hospital in Glasgow and kind of like one of the washpools.
4:14
Speaker 3: It's like outside of Glasgow where people going like have
4:17
Speaker 3: babies and even got a children's boarding it. So I
4:21
Speaker 3: got transferred basically immediately to York Kiln, which was the
4:26
Speaker 3: main children's horstball in Glasgow, and then I spent that's
4:31
Speaker 3: for I spent the first eleven and a half months
4:33
Speaker 3: of my life without being discharged at any one time.
4:36
Speaker 3: So I was in there for almost the whole year,
4:39
Speaker 3: and they didn't really understand what it was. I didn't
4:43
Speaker 3: know if it was sister fibrosis. They were unsure what
4:46
Speaker 3: it was. And then they were doing watch of test
4:49
Speaker 3: and it took them a bit to actually figure out
4:52
Speaker 3: that it was harf sprung two days because back then
4:56
Speaker 3: it was so rare to have her sprungs. So I
4:59
Speaker 3: was born ninety eight and then we had a doctor
5:02
Speaker 3: called Mohammad Holding, so that was my doctor when I
5:07
Speaker 3: got transferred over to York kill and he ended up
5:10
Speaker 3: speaking to different professors and all that around the world.
5:14
Speaker 3: In Canada and everything, and actually they got the hushprung
5:17
Speaker 3: diagnosis because they didn't think it was hush sprung because
5:21
Speaker 3: it was so severe. That's why they didn't think it
5:25
Speaker 3: was hushprung. Creatures what you have some bits so functioning
5:28
Speaker 3: in Bill where when you were going in and looking
5:31
Speaker 3: at Man, I mean there was like none like there
5:34
Speaker 3: was just no function in Bill at all. So then
5:40
Speaker 3: that's when they kind of gave me the I think
5:42
Speaker 3: that's when they kind of gave me the three months
5:44
Speaker 3: like life expectancy. They didn't even think I would make
5:47
Speaker 3: it to their that was like best case scenario. They
5:50
Speaker 3: were kind of expling into my parents and then the
5:53
Speaker 3: doctor Muhammad holding room, stilling contact with he all now
5:58
Speaker 3: lives and I so when I was three months old,
6:01
Speaker 3: he ended up a from moving to Abadabe to be
6:04
Speaker 3: one of the head pidioeticians over there, but he ended
6:08
Speaker 3: up doing a surgery on me which is now done
6:13
Speaker 3: almost for all over the UK. And I called him
6:15
Speaker 3: a my ectomy basically, so where they kind of go
6:19
Speaker 3: and cut a lot of the the dead bowl away
6:22
Speaker 3: and a lot of the nerves and stuff like that.
6:24
Speaker 3: So children nowadays and god, we'll get that done like
6:27
Speaker 3: right away when I'm born. But I didn't get that
6:29
Speaker 3: done until I was about going for a time out here.
6:33
Speaker 3: I think it was about two or three months. I
6:35
Speaker 3: didn't get that done for but that's it would Muhammed
6:39
Speaker 3: to be trying to figure out how to do this
6:41
Speaker 3: operation before he got told from America about it, but
6:44
Speaker 3: it had never been performed in Europe at all, like ever.
6:48
Speaker 3: So he spoke to the surgeons and the professors and
6:51
Speaker 3: America who had done it and it went well and
6:55
Speaker 3: something not so well, and tried to figure out how
6:58
Speaker 3: to do it. So came to the proposed to my
7:00
Speaker 3: parents and mentioned about doing this operation because he thinks
7:03
Speaker 3: it would give me the best possibility of life, because
7:05
Speaker 3: if not, then basically you can't leave all that dead
7:09
Speaker 3: bill just and inside your course it will just like
7:12
Speaker 3: of course problems and basically like what I mean, and
7:15
Speaker 3: you drive pass away basically. So he wanted to do
7:18
Speaker 3: that operation. My mom and dad said yes. And when
7:22
Speaker 3: he went to all the other surgeons, because obviously this
7:25
Speaker 3: was going to be a bit like a twelve hour
7:26
Speaker 3: long they see joy like it was going to be
7:28
Speaker 3: really long. She put it to all the surgeons in
7:32
Speaker 3: the horse bone. Every single one of them said no,
7:34
Speaker 3: that they wouldn't go into a system because they needed
7:37
Speaker 3: another fair hands. Because they all said, before you're going in,
7:40
Speaker 3: you're just fighting a losing battle, and that the kid
7:42
Speaker 3: just going to die on the table basically, so like
7:46
Speaker 3: not to do it. So he ended up finding a
7:50
Speaker 3: I think he was either a read or a registart
7:52
Speaker 3: or a junior doctor at the time who agreed would
7:55
Speaker 3: go in with him to help him in a system.
7:57
Speaker 3: And he is now the head consult for the Eurology
8:02
Speaker 3: and stuff like that. I think it is in the
8:03
Speaker 3: children's worseboat now we still know him. So he agreed
8:06
Speaker 3: to go one with Mohammed when he was just like
8:08
Speaker 3: a reg to help him because all the other doctors
8:11
Speaker 3: said no, they wouldn't go and help him. And that
8:15
Speaker 3: surgery was obviously successful. It lasted like twelve hours and
8:21
Speaker 3: I'm still alive surely for that operation now. So yeah,
8:26
Speaker 3: so that was kind of the start of my journey.
8:30
Speaker 3: And then he was he was like kind of like family.
8:33
Speaker 3: He would always come in every day and come over
8:35
Speaker 3: and see would be there some first thing in the
8:37
Speaker 3: morning to come over and see me and how I'm
8:39
Speaker 3: doing and stuff like that, So he was like really
8:41
Speaker 3: close to his and then he delivered the sad news
8:43
Speaker 3: that he was leaving to go to abad Abbey because
8:46
Speaker 3: he basically got a job over there. But we still
8:49
Speaker 3: speak to him and I've been over to Dubai a
8:52
Speaker 3: few times and seeing him, and he came over to
8:53
Speaker 3: Scotland a few times and I'm going over next March
8:57
Speaker 3: to share him again. So warrant fun. I could not
9:02
Speaker 3: be here because of that operation. But now that opetation
9:05
Speaker 3: parone of four, so many of our half drunk heads
9:08
Speaker 3: that are all born to get that operation the c
9:10
Speaker 3: like other bit I could gether for your body a
9:12
Speaker 3: bit I trying to adapt and stuff. So yeah, so
9:16
Speaker 3: that was obviously a good outcommon that's nature to see
9:19
Speaker 3: that so many of our childs can get that done. No,
9:21
Speaker 3: he will, That's that's fantastic.
9:23
Speaker 2: It were a fascinating story as well, that you were
9:26
Speaker 2: one of the first or pioneers to have that particular operation.
9:32
Speaker 2: And there was one part that did confused me slidely
9:36
Speaker 2: because I didn't know that your your dad had a
9:39
Speaker 2: short segment. Yeah, so when you started presenting hirshbrungs like symptoms,
9:47
Speaker 2: they didn't because that because it was so severe that
9:50
Speaker 2: they didn't think it was Hirshbrugs.
9:53
Speaker 3: Yeah, yeah, because it I didn't keep anything down when
9:56
Speaker 3: I would wait aterally anything. So my mom tried to
10:00
Speaker 3: feed me soon and I was born, took that spewed
10:04
Speaker 3: it right back up and it wasn't it wasn't like
10:07
Speaker 3: it was just bio, like it was just pure bio
10:09
Speaker 3: that was coming up. So they didn't understand why that
10:13
Speaker 3: was just repeatedly happening. And then I went across obviously
10:18
Speaker 3: to York kill and go put on TPN within the
10:22
Speaker 3: first couple of days of my life, and then I
10:25
Speaker 3: went in got a stroma and then got Maggie showed
10:28
Speaker 3: me to put in pard me to drain obviously my
10:33
Speaker 3: bio because I would just producing bio content like constantly,
10:36
Speaker 3: even though I wouldn't get anything, and of that, I
10:38
Speaker 3: would just continuously being stick like fifteen fifteen, twenty tenybody.
10:43
Speaker 3: So they just did not understand why that was happening,
10:46
Speaker 3: because if it was harsh Sprungs, then it shouldn't have
10:49
Speaker 3: been Civie. If it was hufh Sprungs, and I should
10:51
Speaker 3: just be having like a build up and stuff. I
10:53
Speaker 3: wouldn't have been able to go to the toilet. I
10:55
Speaker 3: wasn't going to the toilet anyway, Like I never passed anything.
10:58
Speaker 3: I never passed my corney or anything when I was born,
11:01
Speaker 3: So they knew there was obviously something like blocking down there.
11:04
Speaker 3: But that's why they thought about sixty fibrosis and everything else,
11:11
Speaker 3: because they thought it was a blockage like that was
11:14
Speaker 3: stopping something from going down, So they didn't. My mum
11:18
Speaker 3: said that she thought it was half sprung, like when
11:20
Speaker 3: I was younger and when I was born, she thought
11:22
Speaker 3: that it would maybe something to do with that, but
11:24
Speaker 3: they I don't think they thought it was half sprung
11:26
Speaker 3: because it was so severe and then obviously when he
11:29
Speaker 3: took me in a few days old, no, like they
11:33
Speaker 3: they could only see like a very short amount of
11:36
Speaker 3: actually functioning build. The rest of it was just dead.
11:39
Speaker 3: So that's why they didn't. That's when they were like,
11:41
Speaker 3: we don't know what this is, because back then it
11:44
Speaker 3: was you'd seen her sprung on the scale of short
11:47
Speaker 3: segments stuff obviously, and maybe a long segment, but they'd
11:51
Speaker 3: never seen to the extent where there was nothing that
11:55
Speaker 3: was working. So that's why they were a bit confused
11:59
Speaker 3: in it. It did take them quite a wee while
12:01
Speaker 3: to actually get it properly diagnosed because they just didn't
12:04
Speaker 3: understand what it was. And it was like a professor
12:07
Speaker 3: in Canada who when was the one that said it
12:12
Speaker 3: probably has total technical hath Sprung disease. So because it's
12:16
Speaker 3: shaved in the UK even now, off the top of
12:20
Speaker 3: my head since like I've been born, there was another
12:23
Speaker 3: girl who we've called it. Yeah, there was another girl
12:27
Speaker 3: who was called Abigail when I were about seven, I
12:31
Speaker 3: want to say, maybe six or seven, and she had
12:33
Speaker 3: total she had total tests and a half punk disease
12:36
Speaker 3: and she was like I still remember a lot of
12:40
Speaker 3: times with her, but she ended up passing away. I
12:43
Speaker 3: love her failure due to the complex complexities of TPN
12:48
Speaker 3: basically called TPEN, even though it's starting to get a
12:52
Speaker 3: bit better now with like SLAF and stuffing official oils
12:55
Speaker 3: and everything like that, but like it was, it's just
12:58
Speaker 3: toxic chemicals basically. So and that's what I'm on, like
13:03
Speaker 3: ever since first print on nutition, because if I don't
13:06
Speaker 3: have that, I wouldn't survive. So I've never ate my life.
13:10
Speaker 3: So I've got a line that goes into my heart
13:13
Speaker 3: because I don't eat, so I kind of always describe
13:16
Speaker 3: it if you can imagine like a too a tooth
13:20
Speaker 3: paste where you're like I look at a tuber tooth
13:22
Speaker 3: paste and it like kind of pulsies like when you're
13:24
Speaker 3: squeezing it, so like the two pair comes out. But
13:28
Speaker 3: the way that my bill works is I've got I've
13:30
Speaker 3: not got any nerve for it to actual pulse, so
13:33
Speaker 3: like it basically just sits there like a lock. So
13:36
Speaker 3: if I have anything like food wise or anything like that,
13:39
Speaker 3: it will just basically hits a lock and comes right
13:42
Speaker 3: back up and I'm sick. So that's because I have
13:44
Speaker 3: no bill really that functions at all. So that's why
13:48
Speaker 3: I'm on TPN and I have been since I've been
13:50
Speaker 3: two days with a day or two so anyway, so
13:54
Speaker 3: Abby I would pass the best. So she was the
13:56
Speaker 3: first total in techno in the UK that I'd heard
13:59
Speaker 3: of that we knew of from Glasgow and then now
14:04
Speaker 3: and there's two girls that we know of in Glasgow.
14:08
Speaker 3: And then there was a wee boy called William and
14:15
Speaker 3: we were close with his family in England him he
14:18
Speaker 3: unfortunately passed away. I'm trying to even think it must
14:22
Speaker 3: be like five years ago or something like that. I
14:24
Speaker 3: want to say, well before COVID, actually I think, I think,
14:29
Speaker 3: don't quote me on that. But she ended up passing away.
14:31
Speaker 3: And then there's another girl with total and technical called
14:33
Speaker 3: quote called April, and she lives in England. So at
14:38
Speaker 3: the top of my head, the other's me so en,
14:42
Speaker 3: I'm well, that's faecally about five of us in the
14:46
Speaker 3: UK that I know of. There might be more. Don't
14:48
Speaker 3: quote me on that. So there's five. That's how we are. Like,
14:53
Speaker 3: totally sprungs is always for the lords of long sedgment,
14:55
Speaker 3: total klonic and short segment. My son who's got total
14:59
Speaker 3: chronic so an ultra long. So like there's so many
15:03
Speaker 3: different variations, but totally was like so rare to come by.
15:08
Speaker 3: So yeah, because TPN back then was so harsh on
15:11
Speaker 3: your lover and half on your organs and everything like that,
15:14
Speaker 3: they tried to augustly stay away from being TPN to
15:16
Speaker 3: kind like a life happened since I've been to day
15:20
Speaker 3: old basically, so yeah, so that was kind of that.
15:24
Speaker 3: And then I spent the first eleven and a half
15:25
Speaker 3: months in the horseboat when I was born, and Hi
15:31
Speaker 3: so what's different infections and everything else. And then my
15:36
Speaker 3: mom and dad took over my care, doing my lines
15:39
Speaker 3: and everything because all the time we were told, but
15:43
Speaker 3: my mum would I deadly told I wouldn't. I would
15:45
Speaker 3: never leave the hospital like I would always be in
15:47
Speaker 3: the hospital. There would be no way that he'd be
15:49
Speaker 3: able to do this at all because all the APN
15:52
Speaker 3: and drugs and back of it fluid and everything. My
15:56
Speaker 3: mum used to take me over till like Ronald McDonald.
15:59
Speaker 3: I don't you're the Ronald mcdonaldsh I have that in England,
16:02
Speaker 3: don't you? Yes?
16:03
Speaker 2: Yeah, I always kept messages from people saying you need
16:07
Speaker 2: to talk more about the Ronald McDonald, and I always forget.
16:11
Speaker 2: So I'm really glad you brought that up because that
16:13
Speaker 2: reminds me.
16:17
Speaker 3: So like when I was born, my mum was actually
16:20
Speaker 3: from My mum was from Donon, so they had a
16:22
Speaker 3: house in dinner, which is to go out goes like
16:25
Speaker 3: an hour. It's like an hour and over an hour,
16:27
Speaker 3: so it's like you can get you can go to
16:29
Speaker 3: it by a ferry or you can drive down the
16:30
Speaker 3: roadway light the road, so it's like an hour and
16:33
Speaker 3: a bit away. So my parents got told all this,
16:35
Speaker 3: so I would never I would never go to dinner,
16:38
Speaker 3: like I wouldn't be able to live there because it's
16:39
Speaker 3: too far away from the Horsbow. I need to live
16:42
Speaker 3: within a fifteen minute withinity of the hospital if I
16:44
Speaker 3: took on. Well, So when I was born, within a
16:47
Speaker 3: couple of month, my mom and Daddy and Gub selling
16:49
Speaker 3: their house and Donner and moved. But they lived in
16:54
Speaker 3: Ronald McDonald since I was like put in New York Hill.
16:57
Speaker 3: So they lived there for like eleven months and then
17:00
Speaker 3: they managed to get a house in Knightfred and thank
17:03
Speaker 3: to the they got a con they got a council
17:06
Speaker 3: house and from back then it was the first Minister
17:10
Speaker 3: Donald Doer who basically my mom ended up contacting like
17:14
Speaker 3: the local MFP like local councilor for that area and
17:18
Speaker 3: said that we needed a house because we would never
17:21
Speaker 3: have been able to get home. And then we got
17:23
Speaker 3: a control house. But they lived at Donald McDonald and
17:26
Speaker 3: my mom used to take me over in the pram
17:28
Speaker 3: with like the three I don't know, like the free
17:31
Speaker 3: iveat like the big massive pumps that you would be
17:33
Speaker 3: on like an horspital, you know, how you go on
17:35
Speaker 3: and like it's got the big pumps that run the
17:37
Speaker 3: flood through and all that. So they used to be
17:39
Speaker 3: like the size I'm trying to even think about the
17:42
Speaker 3: size them a comparison. I was playing that like honestly
17:49
Speaker 3: with like the size of the TV, like half the
17:50
Speaker 3: size of like a thirty two inch TV, I would say.
17:53
Speaker 3: So I was on three of them when I was younger,
17:55
Speaker 3: So my mum used to attack from to the pram
17:57
Speaker 3: to then push me over to Ronald McDonald to get
18:00
Speaker 3: out there, get out the horspital. That would be others
18:02
Speaker 3: who could go, but Donald McDonald were amazing. And soon
18:07
Speaker 3: on down the line when I had my boy and
18:10
Speaker 3: we were in Ronald McDonald for tenders as well, so
18:13
Speaker 3: I got to experience Ronald McDonald from an adult parents'
18:17
Speaker 3: side of things, and they were out there. They're amazing,
18:20
Speaker 3: Like they don't get enough praise from what they do
18:23
Speaker 3: because they are just the absolute lifesaver for family. And
18:26
Speaker 3: I would know so much so many families as well
18:28
Speaker 3: that we used them from people up north that come
18:31
Speaker 3: down to Glasgow. A lot of people come up come
18:34
Speaker 3: down to Glasgow because it's like the center for Children's
18:36
Speaker 3: Hospital in Scotland. So yeah, that used to be like
18:40
Speaker 3: my day out trip when I was a wee baby.
18:42
Speaker 3: And then my mum fought and fought the hospital to
18:47
Speaker 3: get trained on to do my traveness lines and stuff.
18:50
Speaker 3: So then I see you us to like take her
18:52
Speaker 3: around to the treatment room like in secret and teach
18:55
Speaker 3: her how to do my lines, to try and teach
18:57
Speaker 3: her how to do it so they could hopefully try
18:59
Speaker 3: and get me home. So my parents for the very
19:01
Speaker 3: first people to ever get IVY trained to actually be
19:05
Speaker 3: able to take me to get home. And I got
19:07
Speaker 3: home for a living when I would live and a
19:10
Speaker 3: half months, I got home for like three days and
19:11
Speaker 3: then I would back in the overbol we are temperature.
19:14
Speaker 3: But they did, like but they were the very first
19:16
Speaker 3: people to actually do a TPN at home. Back then
19:19
Speaker 3: it wouldn't have a bad dog that you would be
19:21
Speaker 3: able to get home, but they managed to fight and
19:24
Speaker 3: they'd done that for me. So then we got home,
19:28
Speaker 3: and yeah, a few years of my life for a
19:31
Speaker 3: struggle obviously just temperatures and just not taking well. And
19:36
Speaker 3: once my mum took over my Once my mom and
19:39
Speaker 3: dad took over my care, they wanted to do it
19:41
Speaker 3: because I mean infection, I would have like line in
19:43
Speaker 3: section because it would have been handled by different enough
19:46
Speaker 3: as you can't imagine. And once you started doing that,
19:49
Speaker 3: then then my infections went down dramatically. I've not had
19:54
Speaker 3: a line infection since I've been like three, so I'm
19:58
Speaker 3: about twenty six, So yeah, I've not had a line infection.
20:02
Speaker 3: I think it's even longer than that, i'd be honest
20:03
Speaker 3: for you, so probably twenty five, twenty four, twenty five
20:07
Speaker 3: years or something since I had my last line infection.
20:10
Speaker 3: And that supt I credit to my mom and my mom,
20:14
Speaker 3: my dad, and then also me when I moved out
20:17
Speaker 3: when I was eighteen, so I've done it e ada
20:20
Speaker 3: since NIF Well, So I was a lot of fussed
20:24
Speaker 3: when I was born and growing up, and then it
20:27
Speaker 3: was the fust to go home and pumps. Obviously that
20:30
Speaker 3: was never the thing. So my mom had like these
20:32
Speaker 3: three ive acts attached to the wall in the house
20:36
Speaker 3: so like they were hanging up, and then I could
20:37
Speaker 3: only go like a meter from the line obviously to
20:41
Speaker 3: be able to play and stuff. So I went back
20:44
Speaker 3: at foods obvious. It's absolutely mental that like it was
20:47
Speaker 3: like that because nowadays it's like horrible pumps and everybody
20:51
Speaker 3: has in their backpacks and stuff. But again, like my
20:57
Speaker 3: dad went over to an American conference in America and
21:02
Speaker 3: seeing these portable pumps and managed to get ran by
21:06
Speaker 3: the chief executive and the hospital who we do really
21:08
Speaker 3: well ton Us invest about going to this big, massive
21:12
Speaker 3: conference called the Holy Conference in America. We are basically
21:16
Speaker 3: everybody that's got gut problems and buff go to. So
21:19
Speaker 3: last year they just had a convention. There were like
21:20
Speaker 3: over five hundred families that attended it. It's like the
21:23
Speaker 3: biggest attended conference in America for people were like shortgutt
21:27
Speaker 3: and everything. So my dad got the go ahead from
21:31
Speaker 3: the chief executive when I was younger to go over
21:34
Speaker 3: to see it and said if it was anything that
21:38
Speaker 3: would benefit the hospital and children with on pumps, then
21:42
Speaker 3: buy it and bring it back over and we can
21:44
Speaker 3: learn about it and duff. So my dad went over
21:46
Speaker 3: with the credit card from the hospital and brought back
21:50
Speaker 3: the first intravenous pumps that were used portable and intravenoce
21:53
Speaker 3: pumps that were used. So I just imagine that went
21:57
Speaker 3: from the ivas that were like half the size of
21:59
Speaker 3: TV into a portable pump that could fit in your hand,
22:03
Speaker 3: so if the warrant flar of the horde pole sending
22:05
Speaker 3: my dad over and I was thinking of the idea,
22:08
Speaker 3: and then we got the first portable pumps that people
22:11
Speaker 3: were able to use in Scotland. So yeah, it's fantastic And.
22:16
Speaker 2: I imagine that some people are quite happy when they're
22:19
Speaker 2: the first to do something or the first to have something.
22:23
Speaker 2: Does the novelty wear off as you've had so many firsts?
22:29
Speaker 3: That's funny, No, I wouldn't say so. I think it's true.
22:34
Speaker 3: I always view it as things like I always view
22:36
Speaker 3: that I went through so many challenges and things in life,
22:41
Speaker 3: but it's for the better of so many other children
22:44
Speaker 3: that have following me, and like I feel, I feel
22:48
Speaker 3: kind of like privileged that I was able to do that.
22:50
Speaker 3: And don't get me wrong, it's obviously tough at the
22:53
Speaker 3: time and everything that you go through that, but even
22:56
Speaker 3: like me and everything when children are born, and like
23:00
Speaker 3: knowing that stuff like that happened because you went through
23:03
Speaker 3: that and my Moamy did that operation, and like pourable
23:07
Speaker 3: pumps and all that and getting home, like getting home
23:10
Speaker 3: and people getting like Ivy trained, like back when I
23:13
Speaker 3: was younger. They wouldn't like there wasn't g I teams,
23:16
Speaker 3: so there wasn't like the teams that were specifically for
23:20
Speaker 3: kids' way and technical problems or anything. We were just
23:22
Speaker 3: under the surgeons. So like there's people like the nurses
23:26
Speaker 3: and stuff like the GI and nothing. You're killed. Like
23:29
Speaker 3: used to say to my mom said at that party
23:32
Speaker 3: we were talking about Elerly it wasn't for my mum
23:34
Speaker 3: and dad, then they wouldn't have had a jojob and
23:38
Speaker 3: that wouldn't have been set up and able because it
23:40
Speaker 3: was my mum and dad that actually came about with
23:42
Speaker 3: the idea because they were doing all of this in
23:44
Speaker 3: America obviously, and in America they were a lot more youth.
23:47
Speaker 3: The youth in Canada to catering for children work cut problems.
23:52
Speaker 3: But because it's so vere in the UK with compared
23:54
Speaker 3: to the population of the North America all this way,
23:57
Speaker 3: it wasn't like required and it wasn't needed. So when
24:00
Speaker 3: they started having light drops up, all crops up of
24:04
Speaker 3: different children, we got problem. That's when they started doing it.
24:06
Speaker 3: Because we'd mentioned about it. We would run it by
24:10
Speaker 3: everything with the surgeons, and the surgeons be like, yeah,
24:12
Speaker 3: that's fine because the surgeons literally were just like my
24:14
Speaker 3: mom and dad. My mom and dad would obviously every
24:17
Speaker 3: decision that they would take to them that was always
24:19
Speaker 3: well thought out of and it's always spoken to other
24:22
Speaker 3: families that once who was spoken and we got to
24:26
Speaker 3: know what our families in America and Canada through my
24:29
Speaker 3: mum liked back then her net and writing letters back
24:32
Speaker 3: and forward to everybody and stuff like in America, finding
24:35
Speaker 3: more information out and stuff, so that everything that we
24:37
Speaker 3: decided to do was obviously valid from children and families
24:42
Speaker 3: that have had experience and they went through this in America,
24:44
Speaker 3: so they kind of just always went to the surge
24:47
Speaker 3: and said, I think we should do this, not yeah,
24:49
Speaker 3: that's fine, And then that was kind of where now
24:52
Speaker 3: it's like you've got your own you've got the GI
24:54
Speaker 3: team and they take forward. But don't get me wrong,
24:56
Speaker 3: the doctors are there, but to parents and the fact
24:59
Speaker 3: that we've always noble so.
25:01
Speaker 2: Yeah, yeah, well you're there day in day out, aren't you.
25:04
Speaker 3: Yeah.
25:05
Speaker 2: And speaking of you mentioned helping people and obviously being
25:08
Speaker 2: the first and you being pioneer, you seem to have
25:12
Speaker 2: helped people or once help people. It's been a passion
25:15
Speaker 2: of yours, your entire life, and I'd like to move
25:18
Speaker 2: on if I made to Samuel Smiles, which you created
25:22
Speaker 2: in two thousand and six, so you must have been
25:24
Speaker 2: around about eight years old when you created that, and I.
25:28
Speaker 3: Know it was two seconteen. Yeah, two hundred and sixteen,
25:32
Speaker 3: was it? Yeah, it was from eight my seconding Buffy.
25:36
Speaker 3: Oh no, you're going to make me do them after
25:38
Speaker 3: year twenty fourteen, that's when it was. Twenty two thousd
25:42
Speaker 3: and fourteen was when I.
25:46
Speaker 2: Misread it began thinking about setting up the chair and
25:50
Speaker 2: six sorry sorry, I'll miss Vertu website.
25:53
Speaker 3: Fade and to get Brad has to play secting Buffy party.
25:58
Speaker 3: But we've been poor talking about doing it for you yourself,
26:02
Speaker 3: like a very long time. I would just because I
26:05
Speaker 3: I'd always grown up being so rare. Like I'm not
26:09
Speaker 3: saying that's a bad thing, but like I had to
26:12
Speaker 3: make a WI foundation and I could apply for that,
26:15
Speaker 3: and we went to Florida for a week, which was
26:18
Speaker 3: amazing back in twenty ten. So that was brilliant and
26:23
Speaker 3: we loved it. But when it came to charities out
26:26
Speaker 3: there for kids with rare diseases, there wasn't really many
26:31
Speaker 3: like you had, like the one called the family Fun,
26:33
Speaker 3: but we would be able to go on a caravan
26:35
Speaker 3: holiday late once a year. But out with that, there
26:38
Speaker 3: wasn't really any charities that you could apply for that
26:41
Speaker 3: were specifically for rare diseases. And don't get me wrong,
26:46
Speaker 3: like the charities out there that are like for the
26:48
Speaker 3: heart long cancer charities, they all do amazing works. Like
26:51
Speaker 3: I'm not discrediting at all, just because you're so vere
26:55
Speaker 3: you don't fall into any other categories. And that's what
26:57
Speaker 3: I kind of lot often realize when I would grown up,
27:00
Speaker 3: not because I would like I want to get more
27:02
Speaker 3: things than anything. It wasn't that at all. I was
27:04
Speaker 3: just like thinking about our children and going like when
27:07
Speaker 3: they're like when they're growing up, because they're so there,
27:09
Speaker 3: they can't apply for certain charities and they make a
27:11
Speaker 3: wish with amazing but you can only apply for that
27:14
Speaker 3: once and all the way like understandably. So so that
27:18
Speaker 3: was the one thing I was a bit like. So
27:21
Speaker 3: on my sixteen birthday, which was a sadry pie, my
27:24
Speaker 3: mom said I had was starting not the charity of
27:28
Speaker 3: Samuel Smile, and that was basically for He's worth weird diseases. Basically,
27:34
Speaker 3: they called it Samuel Smile because after my mum, I've
27:37
Speaker 3: always been known for like my smile, because that even
27:39
Speaker 3: after them all operations and all that, they would always
27:41
Speaker 3: see all your still smiling and stuff. I'm always been
27:44
Speaker 3: like that, no matter what, I just always say everything
27:46
Speaker 3: fine and I'm still smiling. I'm just I think I
27:49
Speaker 3: figured I'm just high forty three year because I've been
27:52
Speaker 3: so many healthcare throughout my life, like I would listed
27:55
Speaker 3: for a transplant when I was six years old and
27:57
Speaker 3: went into organ failure. I love a failure and everything,
28:00
Speaker 3: so and being close to death quite a lot of times.
28:04
Speaker 3: So I've just been thankful that I'm still here every day.
28:10
Speaker 3: So that's why they decided to call it Samuel Smile.
28:13
Speaker 3: And the aim was to basically give of our children
28:17
Speaker 3: a smile. So that was why we called it that. No,
28:21
Speaker 3: my mom called it that. I don't really have much.
28:23
Speaker 3: I say so I And that's been going now for
28:28
Speaker 3: that's been ten years this year, which is scary, and
28:31
Speaker 3: it's been with help, well helped like two Ondred families,
28:36
Speaker 3: like we take them one days out and not in
28:39
Speaker 3: the horsebone. I say they need anything, we take them toys.
28:43
Speaker 3: But it's also like the support aspect of well, for
28:45
Speaker 3: Samuel smile, Like we know we know so many different
28:47
Speaker 3: families that we support them and help them. And it's
28:50
Speaker 3: not just about like gift buying stuff, which is a
28:53
Speaker 3: major part of it for the kids. Like don't get
28:56
Speaker 3: me wrong, obviously, like that's what the kids want. They
28:57
Speaker 3: don't really like. They obviously like enjoy it when when
29:01
Speaker 3: when I go up to the Lord's Bone sit and
29:02
Speaker 3: spend time with them and stuff. And it's obviously because
29:05
Speaker 3: he's able to relate because you know that I've been
29:07
Speaker 3: through it. When I was younger, I didn't have that
29:09
Speaker 3: luck for you all known someone that had went through
29:12
Speaker 3: the things we went over to when I was younger,
29:14
Speaker 3: we went over to that ol Lay Foundation, So my
29:16
Speaker 3: dad went one year and then we went in the
29:18
Speaker 3: following year. Like I managed to go over the next
29:20
Speaker 3: year and met so many other people that had like
29:25
Speaker 3: the same condition as me. Souly there's one or one
29:29
Speaker 3: has heard about to say, boy not a boy. Now
29:31
Speaker 3: he's the guy we all are. There was one guy
29:36
Speaker 3: called Roy and who I was just both in America
29:39
Speaker 3: last month, so we managed to meet up with him,
29:41
Speaker 3: so we talked all the time, so he is now
29:44
Speaker 3: he will be happy. But he's now thirty well he's
29:47
Speaker 3: thirty six, so he's ten years older in me. And
29:50
Speaker 3: he's got to own techno her sprunk, so he's the
29:53
Speaker 3: oldest in the world with it, so he's ten years
29:58
Speaker 3: older than me. I think he only had about I
30:01
Speaker 3: want to say about seventeen or nineteen centimeters that works.
30:05
Speaker 3: But he had called over there called gay text, but
30:08
Speaker 3: over here now came over called Terry Died, which basically
30:14
Speaker 3: relates the growth of your intestines for the nerve to
30:18
Speaker 3: work basically. So he'd been on that or well a
30:22
Speaker 3: long long time. But he said to me when we
30:24
Speaker 3: met up, he now being off TPN. It was he
30:27
Speaker 3: over ten or fifteen years over one of the other.
30:29
Speaker 3: So he completely eats females, Ada and everything, and it's
30:33
Speaker 3: like this drug that he'd been taken over there for
30:36
Speaker 3: that long and he'd been completely off his TPN. And
30:40
Speaker 3: then there's another guy who I still speak to a
30:43
Speaker 3: bit often called Patrick, and he's from a Canada and
30:47
Speaker 3: he is I'm not going to put an edge on
30:50
Speaker 3: because then he'll bite, he'll bite me. That the fact
30:53
Speaker 3: that I've Kevin wrong head, but you're a three years
30:54
Speaker 3: older than me. We're not as old. He's not as
30:57
Speaker 3: old Joy, but either a few years older than me.
31:00
Speaker 3: And he just had a son as well, our son
31:03
Speaker 3: bla like eight nine months apart, and he's got total
31:07
Speaker 3: in techno her Sprungs as well. But he is on
31:09
Speaker 3: fil TPN but he eats females a day. He doesn't
31:14
Speaker 3: get any nutritional value something, but he does eat. But
31:17
Speaker 3: he's still on two paying every night. So yeah, like brother,
31:21
Speaker 3: like the three all ones, there was a boy Closs
31:24
Speaker 3: and unfortunately he passed away a few years ago and
31:29
Speaker 3: he was around to famages me as well, but he
31:31
Speaker 3: sadly passed away. So yeah, they like with the three
31:36
Speaker 3: olders tall Stungs and then a lot of younger ones
31:40
Speaker 3: that came up, but as far as I'm aware, there's
31:43
Speaker 3: not any that are older. And with him, like the
31:46
Speaker 3: ten year age gap between us was quite a significant
31:50
Speaker 3: age or made twenty six. And then I think the
31:53
Speaker 3: next one is is Zoie and she's she's I think
31:58
Speaker 3: she's a nice goal now I need to double check that.
32:01
Speaker 3: But there's nobody near like over fifteen, if that makes sense.
32:04
Speaker 3: So there's there's still quite a big gap there. But
32:09
Speaker 3: there was Abigail who was there when I was sick,
32:11
Speaker 3: but she passed away, so yeah, so there's quite a
32:14
Speaker 3: big gap between the rest of us. But anyway, so
32:18
Speaker 3: the reason I started sam you fire up boats to
32:20
Speaker 3: help our families, and that's rea why I've done it
32:23
Speaker 3: and it's still going and yeah, so it's been great.
32:26
Speaker 3: We're going big days out. Families want to go away
32:30
Speaker 3: for a weekend and we provide poor and need help
32:33
Speaker 3: them financially or we do that for them so they
32:36
Speaker 3: didn't go away and get time away. But it's not
32:38
Speaker 3: just for the kids. That's railed for the families and
32:41
Speaker 3: disablings is often sometimes get not forgetting about, but the
32:45
Speaker 3: majority of the attention goes on the main childhoods always
32:48
Speaker 3: for suffering from the conditions. So it's about making sure
32:52
Speaker 3: that the whole families included. We're about to do another
32:54
Speaker 3: a big Christmas get together and December, and that will
32:59
Speaker 3: be the first time that we've gotten together in Corvis
33:02
Speaker 3: because there are so many kind that didn't do anything
33:07
Speaker 3: for a very long time because of all the children
33:10
Speaker 3: are saw complicts and saw it all womanship faced and
33:12
Speaker 3: everything so I'm looking forward to awfully doing that in
33:15
Speaker 3: December where that will be the first team money, but
33:17
Speaker 3: you get all the fifty seventy families that are currently
33:21
Speaker 3: support in together for That'll be good.
33:24
Speaker 2: That'll be fantastic. That'll be brilliant. And if anyone wants
33:28
Speaker 2: to read those the stories, there are several on your website.
33:32
Speaker 2: I've seen lots of stories about going to see Disney
33:36
Speaker 2: on ice go and see various football matches as well.
33:39
Speaker 2: So if anyone wants really nice heartwarming stories from your charity,
33:43
Speaker 2: they are they are all on your on your website.
33:47
Speaker 2: And i'd like to as we're sort of breach o
33:51
Speaker 2: the halfway back, I'd love to talk about your current
33:55
Speaker 2: role as you are a firefighter the moments and you've
34:02
Speaker 2: got sort of helping people with Samuel Smiles to continue
34:05
Speaker 2: to help people with fire fighting. There's definitely a pattern,
34:08
Speaker 2: so you have like to mention a little bit about that.
34:12
Speaker 3: So it's like, so it's it's called firefighter, but it's
34:14
Speaker 3: like in the control room, so that you're in the
34:16
Speaker 3: control room basically so answer all the nine nine nine calls.
34:20
Speaker 3: But that's like the small part of our well, it's
34:23
Speaker 3: it's really hard to ex blade to somebody because it's
34:25
Speaker 3: like it's got a call center that it's a control room,
34:27
Speaker 3: so like we are responsible for taking the calls, and
34:31
Speaker 3: then while you're on the phone, you're also typing the
34:35
Speaker 3: address and the system. You're also then selecting the right
34:38
Speaker 3: appliances or the right fire engine to attend to this
34:41
Speaker 3: to go to the incident, So we need to kind
34:44
Speaker 3: of get them out the door before we've even hung up.
34:46
Speaker 3: And then we're in charge of making sure that the
34:51
Speaker 3: that they will liaise messages back and forth to the
34:53
Speaker 3: control room to us, so we'll record all the loves
34:56
Speaker 3: and then we were essentially everything that goes on behind
35:00
Speaker 3: the scene from an incident is basefore down to us.
35:04
Speaker 3: So they'll go and do the physical firefighting, but we're
35:07
Speaker 3: the ones that are creating the calls, making the incident,
35:11
Speaker 3: sending them on our way, making sure they go to
35:13
Speaker 3: the right place. How many are going to how many
35:16
Speaker 3: fire engines are going do you need special resources to go?
35:20
Speaker 3: And then also on top of that, all the different officers,
35:23
Speaker 3: if officer need to go, they just need to be
35:25
Speaker 3: informed of it. So it's a very complex job and
35:30
Speaker 3: a lot of people think each your shoe hands from
35:32
Speaker 3: nine niney nine and that Sue and that's it done that,
35:35
Speaker 3: which I was silly enough to think that's where it was.
35:38
Speaker 3: But yes, I've been in there since January, and this
35:44
Speaker 3: had been my first full time job because just to
35:48
Speaker 3: do duty, health and everything else I did. I'll do
35:52
Speaker 3: my charity work obviously on the side of that, but
35:54
Speaker 3: I didn't think I would be able to hold down
35:56
Speaker 3: a full time job drift of my health and everything.
36:00
Speaker 3: But I wanted to give us a try. So I've
36:03
Speaker 3: been in since January. I'm trying to think, Yeah, I
36:07
Speaker 3: think January I started by training. It was fourteen weeks
36:10
Speaker 3: and then now I've been in my physical job for
36:14
Speaker 3: since April and I'm loving it. It's been great. It's
36:18
Speaker 3: definitely challenging, but I think because all my life it's
36:22
Speaker 3: being season stuff, with everything that I've been through, it's
36:26
Speaker 3: felt really natural going into this all being able to
36:30
Speaker 3: be on the phone and when people are in Sometimes
36:33
Speaker 3: people are in like the worst scenario that they've been
36:35
Speaker 3: in in their life, and the houses are burning, our
36:37
Speaker 3: other houses are on fire. People are trapped inside our
36:41
Speaker 3: house and the houses are on fire, and they don't
36:43
Speaker 3: know what to do. They're about standing on the phone,
36:46
Speaker 3: keeping them calm, comforting them, supporting them, telling them what
36:49
Speaker 3: to do, making sure that they know that you're on
36:51
Speaker 3: the phone and that you're going to get the help
36:53
Speaker 3: that they need. And it's when stuff like that it's
36:57
Speaker 3: really Rewarden had a call when I like a full family,
37:01
Speaker 3: like a family of five with duck and a foot
37:03
Speaker 3: and like a flat and like three floors up and
37:06
Speaker 3: there was a fire in the clothes and they couldn't
37:08
Speaker 3: get out. And that was at like two o'clock in
37:11
Speaker 3: the morning. But I managed to send the fire engines
37:15
Speaker 3: and everything they managed to get in put the got
37:17
Speaker 3: the fire out and managed to get the family out
37:18
Speaker 3: and keep them safe and stuff. So if stuff like
37:21
Speaker 3: that that it's really rewarding. And don't get me wrong,
37:24
Speaker 3: during that call, it is very intense and it's quite
37:28
Speaker 3: your hearts racing, And never really understood the adrenaline that
37:32
Speaker 3: you would feel from that, but being on the phone
37:36
Speaker 3: with them and known and you're on the phone with
37:38
Speaker 3: um till the crews actually get them later and I've
37:41
Speaker 3: got them and you know they're safe, and being able
37:43
Speaker 3: to experience that and like trying to know that you've
37:48
Speaker 3: essentially helped You've you've helped them and you've kind of
37:50
Speaker 3: not saved your life, but you you had with the
37:52
Speaker 3: Dell to save the life, do you know what I mean?
37:54
Speaker 3: So really haven't.
37:56
Speaker 2: Yeah, you've all played an incredibly large part. No, I
38:00
Speaker 2: wouldn't do yourself down in that you've.
38:04
Speaker 3: But stuff like that just is very rewarding. And I
38:07
Speaker 3: think I've been used to people from the charity of
38:10
Speaker 3: Colin and really hard times in the horse Bow and
38:13
Speaker 3: Chising are really unwell and dividing support for the phone
38:16
Speaker 3: that way or we're going to see them and being
38:18
Speaker 3: there for the support. So it felt very natural to
38:21
Speaker 3: go into this job and I'm just leaves and really
38:25
Speaker 3: thankful that I am in this job and it's such
38:27
Speaker 3: a great job to be in. My work have been incredible.
38:32
Speaker 3: I can't I don't have one bad word to say
38:35
Speaker 3: about them. I had my wet boy or if I
38:38
Speaker 3: had a couple of operations and stuff this year, and
38:40
Speaker 3: I was really worried about what I wouldn't long into
38:43
Speaker 3: the job, but they were just incredibly supporting, supportive and
38:48
Speaker 3: just helped me along the way and tell me, just
38:53
Speaker 3: take you much time off that you need to if
38:55
Speaker 3: it was on horsebone and stuff like that, and that
38:58
Speaker 3: was really good. I think that really made me realize
39:00
Speaker 3: is that these people aren't just like it's not a
39:02
Speaker 3: job for these people, and you spend like your shifts
39:05
Speaker 3: basically are two day shifting two night shifts, so you're
39:08
Speaker 3: two day shifted to ten hours and then it's two
39:10
Speaker 3: fourteen hours, so it's long shifts. But everybody and you're
39:14
Speaker 3: like your watches, what you call it. The people you
39:16
Speaker 3: work with, you're basically like your family. You spend more time.
39:19
Speaker 3: I would say that you spend more time with them
39:21
Speaker 3: and a weekly basis and you do your actual family
39:24
Speaker 3: because you're you're there with them for forty hours a week,
39:28
Speaker 3: which is and it's non stop best so but it's good.
39:32
Speaker 3: Like I get along with everyone and it just like
39:34
Speaker 3: everybody supports each other. And that's when I realized it.
39:36
Speaker 3: You know what, like the fact that the Scottish buyer
39:39
Speaker 3: fervis is I really like a family because you do
39:42
Speaker 3: look out for everybody and you do support you and
39:45
Speaker 3: they've been so great with me and also everything that's
39:48
Speaker 3: happened with my family, so it's been great. I've really
39:51
Speaker 3: enjoyed it. And I look forward to hopefully many long
39:56
Speaker 3: years with them. So brilliant.
39:58
Speaker 2: That's brilliant, And just very quickly before we wrap up,
40:01
Speaker 2: speaking of family, you become a father for the first
40:04
Speaker 2: time around sort of fifteen fifteen or five months ago. Yeah,
40:09
Speaker 2: and your son also has hirsh sprungs as well. So
40:13
Speaker 2: what has that been like being a father with hirshprungs
40:16
Speaker 2: and having a son with hirshprungs as well.
40:21
Speaker 3: It's definitely been an eye opener. We were we were
40:26
Speaker 3: unsure if we'd be able to actually have, like I
40:28
Speaker 3: have a child, and being brutally honest, we were I
40:35
Speaker 3: was under the importation that we didn't know if we'd
40:37
Speaker 3: be able to have a child naturally due to all
40:41
Speaker 3: my medications and antibiotics and huys and everything else. So
40:45
Speaker 3: we were kind of very much expecting that and kind
40:48
Speaker 3: of told it we'd most likely probably need to go
40:52
Speaker 3: down the IV through it if we wanted to have
40:53
Speaker 3: a family, which we were completely fine with him. We
40:56
Speaker 3: knew that was a possibility. So when we were thinking
41:00
Speaker 3: about having a Mittel and we were fuel expecting it
41:04
Speaker 3: was going to be you need to try for a
41:06
Speaker 3: year and then you need to go through that whole process,
41:08
Speaker 3: so we were willing to do that, and then we
41:13
Speaker 3: and then we didn't. It happened actually and we didn't
41:15
Speaker 3: need to go through the IVF route, which we were
41:19
Speaker 3: extremely blessed and thankful for. We were very very much
41:23
Speaker 3: under the impression that the water transmittail was going to
41:25
Speaker 3: have her sprungs. And my mom had Martin and b
41:29
Speaker 3: and then after my mom had me, we had my
41:33
Speaker 3: younger sister who had passed away unfortunately at nine weeks old.
41:39
Speaker 3: But she passed away a cot death. It wasn't anything
41:41
Speaker 3: to do with our sprungs, but she had she had
41:44
Speaker 3: long segment her sprungs. So and then she had went
41:48
Speaker 3: on to have my younger brother, Micah, who's now fifteen,
41:51
Speaker 3: going to be sixteen next week, and he's completely healthy.
41:55
Speaker 3: So my mom had two off and two without. So
41:58
Speaker 3: we were very much we were very much under him
41:59
Speaker 3: for and if we have a kid, probably we'll have
42:02
Speaker 3: her sprung but we wouldn't know until he borne, which
42:07
Speaker 3: we knew that was the case. So when he was born.
42:11
Speaker 3: As soon as we were born, he said that he
42:14
Speaker 3: sounded as he sounded like I had good bill movements.
42:17
Speaker 3: As soon as we but as soon as he was born,
42:19
Speaker 3: he still still hadn't passed the conium with the like
42:23
Speaker 3: a few hours, I still hadn't passed it, and then
42:26
Speaker 3: I want to say it was about twenty four hours
42:30
Speaker 3: he still hadn't passed Jenny, and that's when he took
42:33
Speaker 3: him over to the nick Q and we wake kind
42:37
Speaker 3: into that he had had We had he had her sprungs,
42:40
Speaker 3: but he was defining the OS because we thought it
42:44
Speaker 3: was a short segment. But we were very much under
42:46
Speaker 3: the impression that was going to be short segment because
42:48
Speaker 3: he was still watch for managing to go to the toilet,
42:51
Speaker 3: which was surprising even though we did Bill. Obviously the
42:56
Speaker 3: missing part like function part of the bill, so we thought, I,
43:00
Speaker 3: we've been managing to do that, then he must have
43:02
Speaker 3: a short segment. I forward nine weeks later, we went
43:06
Speaker 3: home and he was on washing Bill wash outs and stuff.
43:09
Speaker 3: But he was still having like Bill movements out with
43:12
Speaker 3: the washouts, so we weren't need to he was still
43:14
Speaker 3: managing to go to the toilet without was intervening. So
43:17
Speaker 3: he went into nine weeks of operation expt to be
43:19
Speaker 3: short segment, and the doctor came back out and said
43:22
Speaker 3: that they had. They had not found any function bill
43:28
Speaker 3: the whole length of he colon, and they were twenty
43:30
Speaker 3: centimeters into his small bill at this point, and he
43:33
Speaker 3: still didn't know if it was any so we couldn't
43:36
Speaker 3: believe that because he was still having bill movements that
43:39
Speaker 3: just didn't make sense. So they basically like and they
43:42
Speaker 3: didn't understand it either. So he has no parts of
43:47
Speaker 3: the colon work, and he's thirty centimeters into a small
43:50
Speaker 3: bill that didn't work. So he had basically one hund
43:53
Speaker 3: and thirty centimeters of dead bill that he would manage
43:56
Speaker 3: and to push basically his toilet out of which they
43:59
Speaker 3: just did and farming as well. So like they just
44:02
Speaker 3: did not they add no idea how she managed were
44:05
Speaker 3: doing it himself for nine weeks. They just didn't understand.
44:07
Speaker 3: So you can imagine o our doc and surprise at
44:09
Speaker 3: the fact when we went in there to receive hopefully
44:12
Speaker 3: which was going to be a simple pisature of going
44:14
Speaker 3: and taking out the small part being on our way,
44:16
Speaker 3: but instead it was he need to have a door
44:19
Speaker 3: bag and that he need to come back in when
44:21
Speaker 3: he's one years old to then get it all reversed
44:23
Speaker 3: and everything because she hadn't. They basically said that he
44:27
Speaker 3: would class us all to a long segment her sprungs,
44:30
Speaker 3: so passed the totalal on it because he'd not got
44:33
Speaker 3: like he now went to the small bill. So but
44:35
Speaker 3: he'd been amazing, like he'd managed to eat. My wife
44:39
Speaker 3: said it to her. She liked dull breast freedom, so
44:43
Speaker 3: he would breastfeed as a baby, and then he was
44:47
Speaker 3: completely completely breastfeed, which is something that I was never
44:50
Speaker 3: able to do, and managing to tolerate milk and keep
44:53
Speaker 3: it down and everything, which we were so pleased with.
44:56
Speaker 3: And then when a doctor came and sat us down
44:58
Speaker 3: and said, I'm really sorry that you know, like he's
45:00
Speaker 3: got her strungs and these quality life isn't like we
45:03
Speaker 3: don't know what it will be like and stuff, and
45:05
Speaker 3: you might have a trama for the rest of his life.
45:07
Speaker 3: And like a kind I said, I don't think you
45:09
Speaker 3: actually realized that the fact that like we were, we
45:12
Speaker 3: were very much under the impression that he would have
45:14
Speaker 3: her sprung but the fact that I like ex fish
45:17
Speaker 3: pers time I know that my wife's going to be
45:18
Speaker 3: sitting there, I said, my son is going to be eating.
45:20
Speaker 3: I was like, like that is like the best case
45:22
Speaker 3: scenario that I could have hope for my son and
45:25
Speaker 3: she would have been taken a back show. I never
45:27
Speaker 3: really realized it and never viewed it like that. I've
45:29
Speaker 3: never had the privilege of being able to sit down
45:31
Speaker 3: and have a mule. I like, but now that I
45:33
Speaker 3: know when we go out to like the restaurants and
45:35
Speaker 3: out for dinner, like my wife will have my son
45:38
Speaker 3: that's going to be able to sit down and eat
45:39
Speaker 3: a meal with her, I like that. It's like I
45:42
Speaker 3: can't act for anymore. And people with her, people with
45:46
Speaker 3: her sprungs have a very perfectly normal life. So and
45:50
Speaker 3: I'm on the very extream side of it, and I've
45:53
Speaker 3: had like eighty five operations and everything, and then I'm
45:56
Speaker 3: on my TPN and I was in it for twelve hours,
46:00
Speaker 3: Like i ive an amazing life in my opinion, Like
46:04
Speaker 3: I've I got to football. It's sometime I play football
46:07
Speaker 3: with my friends. I've got a job, I'll work like
46:14
Speaker 3: a car, I've got a house like you. I mean, like,
46:15
Speaker 3: I love a completely normal life. From when they told
46:18
Speaker 3: me that I wouldn't. So the fact that work case
46:20
Speaker 3: scenario for my tale is he might He's not got
46:23
Speaker 3: to stolen anymore. That got the worst. And he's doing amazing.
46:28
Speaker 3: I been doing amazing withouty stoler and he's only going
46:30
Speaker 3: to toilet like four or five times a day, which
46:32
Speaker 3: is like a normal have sprungs they would class at
46:36
Speaker 3: any baby. So like he's done. He's been incredible and
46:40
Speaker 3: he eats like an absolute tank. So but yeah, he's
46:46
Speaker 3: been amazing and it's been great to to kind of
46:50
Speaker 3: go through the journal fatherhood. I don't think the doctors
46:53
Speaker 3: are a bit not sure the times allfully because me
46:57
Speaker 3: and Leanna are so experience didn't know exactly what we're
46:59
Speaker 3: talking talking about, and we pushed far, in my opinion,
47:02
Speaker 3: we pushed for everything. That's sure. They didn't really want
47:04
Speaker 3: to feed them when he was only a week old,
47:06
Speaker 3: and said, oh no, we don't want to feed them,
47:07
Speaker 3: but I don't know, let's freedom, let's see how he
47:10
Speaker 3: can do. And obviously that was like and now that
47:15
Speaker 3: was the catalyst for back then and they were shocked
47:17
Speaker 3: they would managing to keep everything down and doing so well.
47:19
Speaker 3: So he was in the hospital for the first two
47:21
Speaker 3: weeks of his life and we were in Ronald McDonald
47:26
Speaker 3: and then he came home at two weeks old, went
47:29
Speaker 3: back and at seven weeks later when he was nine
47:31
Speaker 3: weeks old, to have that one, and then went back
47:33
Speaker 3: in when he was a year old to get to
47:37
Speaker 3: get dome of a Burton to take the whole calling
47:39
Speaker 3: away and everything else, and unfortunately there was complications in
47:43
Speaker 3: that operation, so we needed to then go back and
47:47
Speaker 3: three four weeks later to then go in and get
47:49
Speaker 3: his dome of the removed permanently removed again because he
47:52
Speaker 3: couldn't do it because of the complications. But since then
47:56
Speaker 3: he'd been completely fine and he's now fifteen. Well you'll
48:00
Speaker 3: be fifteen months next week, any great, So yeah, it's
48:05
Speaker 3: been it's been amazing. I'm just thankful for everything in life.
48:10
Speaker 3: So yeah, I'm just fantastic. Glad that was going.
48:14
Speaker 2: Well, that's fantastic. That's a that's a lovely sentiment to
48:17
Speaker 2: think to finish U. So thank you, thank you ever
48:20
Speaker 2: so much. And just just my last little question, where
48:24
Speaker 2: can people find Samuel Smiles find the charity?
48:30
Speaker 3: Yeah, if you just if you're just going to Google
48:32
Speaker 3: and just type in Samuel Smile, I'm sure it'll pop up.
48:35
Speaker 3: And if you can't, if you're not sure, it's just
48:38
Speaker 3: that it's a Wabie dot Samuel's dot Smiles dot co
48:42
Speaker 3: dot UK, or if you just go on Facebook and
48:45
Speaker 3: type in Samuel Smile, it's all pop up with the
48:49
Speaker 3: names Samuel Bell. But that is a charity page, so
48:52
Speaker 3: you can just add me all night as well. Not
48:55
Speaker 3: for anybody listening to has any questions about anything about
48:57
Speaker 3: her strongs or anything like that, and feel free to
49:00
Speaker 3: Josh go and send me a message. And well for
49:04
Speaker 3: any he'll pros supporter or if you want to chat
49:05
Speaker 3: anything like that or we're gonna available awesome.
49:08
Speaker 2: Well, thank you ever so much for joining me. And
49:11
Speaker 2: it goes without saying, but I'll say it anyway. Thank
49:13
Speaker 2: you so so much for the Samuel Smiles charity and
49:16
Speaker 2: for everybody you help.
49:17
Speaker 3: No, thank you, Tom, No, I appreciate you having me
49:20
Speaker 3: on and for do it again something pleasure. Thank you.
49:26
Speaker 1: Thank you for listening to the podcast. Find us on
49:28
Speaker 1: Instagram Tom's Underscore Hirshprung's Underscore podcast. Listen to previous episodes
49:34
Speaker 1: on Spotify by searching Tom's Hirshprung's podcast