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Episode 60: Duncan Passmore - Pearson Syndrome
26 Plays15 days ago
This is the deeply moving story of Duncan and his son Torin, who battled Pearson Syndrome, a rare mitochondrial disease. With raw honesty, Duncan shares the journey of loving, raising, and ultimately saying goodbye to his son, revealing not only the heartbreak but also the enduring love and strength that shapes his family's life today. We talk about how they navigated an unpredictable and devastating diagnosis, and how it led the family to cherish every moment.
Now, in his son’s memory, Duncan is building a wooden sailing boat, fulfilling Torin’s dream of sailing to Wildcat Island on Lake Windermere, as inspired by his favourite book, Swallows and Amazons. This act of love and craftsmanship stands as a testament to a boy who made the most of his short life.
The song that Duncan chose is Hedwig’s Theme by John Williams.
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Transcript
Introduction to the Podcast and Guest
00:00:00
Speaker
Hi, I'm Sylvain Berthelot and you're listening to On One Condition, a podcast to raise awareness about health conditions by listening to people who live them every day.
Taurine's Favorite Song and Love for Harry Potter
00:00:10
Speaker
My guest today is Duncan Passmore and we're going to talk about his son, Taurine and Pearson syndrome.
00:00:18
Speaker
Hi Duncan, how are you doing? Hi, I'm good, thank you. Yeah. I'm doing pretty good. The sun is out. Yes. It feels like we haven't seen the sun for months on end.
00:00:31
Speaker
Yeah. Well, thanks for joining me. We'll talk about Torin in a sec, but I love starting with a song. So which song did you choose and why?
00:00:45
Speaker
See, I'm still undecided as as to which one I'm going to tell you.
00:00:50
Speaker
there's one There's one that I found very, very powerful over the last couple of years. And then there's one that, you know, is just all about Torrin. And I think I'll go with the one that's all about Torrin.
00:01:02
Speaker
It's Hedwig's theme, which was composed by John Williams. It was part of the, it was the basically classic Harry Potter sound soundtrack. It's the one that everyone recognises the theme to Harry Potter.
00:01:15
Speaker
Yeah. And yeah, Torrin was a huge encyclopedic Harry Potter fan. So yeah, I think think it would be that one. Nice, nice. i like that. And we usually get songs like with lyrics, so it's a nice change.
Understanding Pearson Syndrome
00:01:33
Speaker
So when we when we had a catch-up, you explained that Pearson syndrome is a type of mitochondrial disease.
00:01:45
Speaker
Would it be a good place to start if you could explain a bit what that means? Yeah, I mean, broadly speaking, mitochondrial disease is to do with the mitochondria.
00:01:59
Speaker
And for those that don't know much about cell biology, the mitochondria are known as an organelle. So we have organs, we have our brain and our heart and our lungs and liver and all all the organs of the body that perform certain functions within our bodies. And within each cell, we also have things called organelles, structures called organelles, and they all perform specific structures. So you have the mitochondria, which performs the the function of creating energy for for the cell.
00:02:33
Speaker
and for the tissue around it. And therefore that it's, it's a really fascinating story, the kind of the origin of mitochondria, because they, unlike the other organelles within, within the cells, you know, structures that produce ah proteins and structures that, or the other ones trying to think, it's going back to my biology days.
00:02:57
Speaker
the But yeah, This one's absolutely key. The mitochondria is totally key to to life, actually. yeah The origination of mitochondria goes back to the primordial soup where ah symbiosis developed between a bacterium and, ah suppose, a but eukaryotic cell, you know, like ah ah old like us.
00:03:21
Speaker
Yeah. This symbiotic relationship happens so so that the cell engulfs the bacteria, right? And this kind of relationship develops whereby the back you know this deal's made where it says, well, if you if you produce energy for us, we'll just engulf you and protect you.
00:03:37
Speaker
you know um And that's how it happened. And so as a relic of that relationship or what all the relationship all the you know the kind of life that that bacterium had beforehand, they still retain certain amount of DNA. They have a plasmid, which is what bacterium have um as their kind of nuclear, their DNA.
00:03:57
Speaker
And in mitochondria we we still retain ring of dna okay it's back way back to billions of millions of years ago you know and those that that ring of dna still performs a function within our cells so this is kind of a quite a wide explanation there's different types of mitochondrial disease one is where you can have
00:04:23
Speaker
ah like a duplication or a deletion or a mutation within that particular mitochondrial ring. Yeah. But there's only 13 proteins that can be made up and used within that DNA. So obviously the process of making energy in the body is far more complex than that and requires a lot more proteins.
00:04:42
Speaker
So that also, the rest of it has to come from the parental DNA. Yeah. the the combination of those two. And so you have other types of mitochondrial disease where it's the combination of one or both of the parental DNA mix that creates mitochondrial illness as well.
00:04:59
Speaker
Okay. Torrin's disease in particular was not to do with the parental DNA. And in fact, science generally believes that mitochondrial DNA yeah is passed down through the mother's line.
00:05:15
Speaker
Although there's various papers to say that, um, that might not be the case, but it's a kind of a general term that's used. like they they They say mitochondrial Eve as in the mitochondria from the original first human has handed down through the female line.
00:05:31
Speaker
Okay. Taurine's disease is and to do with a deletion of the actual mitochondrial DNA in itself. Okay. Okay.
Biology Knowledge and Medical Insights
00:05:43
Speaker
Well, that's interesting. Did you know all this before Taurine was diagnosed or is it something that you searched up? I knew about the functioning of mitochondria. i did oh ah did i I didn't finish my degree, but i I started a degree in biomedical science. Okay. Okay.
00:06:01
Speaker
which proved ah useful, you know, by the time Torin was born and then, you know, he got ill and his diagnosis came about because I was the only one in the family that really understood yeah what was what the doctors were talking about, you know.
00:06:16
Speaker
Yeah. Yeah. And it's something that i find quite important in a way to understand the functioning of a disease because that can help you then understand the consequences.
00:06:30
Speaker
you Do you agree with that? Yes. Yeah, absolutely. And You know, you can go you can go the other way sometimes and and try to look look for the causes as well, but not with this disease.
00:06:42
Speaker
No, no. Not with this
Early Symptoms and Diagnosis of Taurin's Condition
00:06:44
Speaker
disease. I think one of the things I found myself doing was looking more at the kind of the the name. And you could just say, well, it's just a name that someone picked up because and everyone uses Latin or or Greek as a, you know, and that's just how how it works. is There's no resemblance to the disease.
00:07:02
Speaker
But I don't know, I think language is a bit more subtle than that. And the the word mito, M-I-T-O, comes from the Greek word mythos, which means story, basically. Okay. And chondria is is a description of kind of thread.
00:07:20
Speaker
So I found it really useful, you know, to kind of find that mitochondria means the thread of a story. Yeah. Yeah, it's helpful to kind of be reminded of that every now and then.
00:07:32
Speaker
Yeah, yeah. my We just very briefly mentioned diagnosis. How was Torrin's diagnosis? How did you discover that he was affected by Pearson syndrome?
00:07:47
Speaker
um In the early stages of the disease, kids often don't survive infancy. And and he was born very healthy. about so i think he was like seven and a half pounds.
00:08:01
Speaker
He was fine. and But after a few months, he seemed to be really pale. And Sian, one thing I've learned over the years is to never dismiss a mother's kind of instinct for her own child.
00:08:17
Speaker
And Sian would say to me, he seems really pale. What do you think? And I'd just kind of say, well, I have no idea. I've never had a kid before, so I don't know. you know But she was quite insistent on that. And then at about five months old, she took him to the health visitor to to you know to get weighed and to be checked out. and the The health visitor said,
00:08:37
Speaker
Okay, he does look really pale. I need to need to send you to the GP. Sian took him to the GP and the GP took one look at him and said, right, you need to take him to A&E.
00:08:49
Speaker
Oh, wow. Here's a letter. and So we took him to A&E and e and they they put a cannula in his and his hand. And I remember... the the blood that came out of his vein was kind of like a dark rose almost, you know, it was really, really thin and light, you know, um where that Venus blood should be dark, you know.
00:09:15
Speaker
And the African doctor in A&E kind of staggered back and just said in his you know the African accent, and he's going to need a he's going to need a transfusion.
00:09:26
Speaker
And so from that moment on, we knew that there was something quite serious going on. So that was five months old. He was transfusion dependent for about a year.
00:09:41
Speaker
But five months after that, so when Torin was about 10 months old, after months and months of tests and and MRI scans and bone marrow samples being taken out of his hip and they came up with the diagnosis of Pearson's skin.
00:09:59
Speaker
And did the the diagnosis come with an explanation or were you left hanging or waiting for more information?
00:10:10
Speaker
No, I mean, it was pretty conclusive. You know, we asked for one thing we did ask was for for a retest. We just said, you know, we just need to know that this is that this is conclusive, you know.
00:10:26
Speaker
So can you please run the test again, just to make sure that you come up with the same result? Which they obliged they they obligingly did. But no, you know, they said Pearson syndrome is a a progressive degenerative disease.
00:10:45
Speaker
If the child is lucky enough to make it through the infancy period where they can experience all sorts of kind of not just kind of anemia from the red blood cells, but they call it pancytopenia. So it's all kinds of blood issues to do with white blood cells, red blood cells, and plasma problems, organ failure as well.
00:11:06
Speaker
Now, the only symptom that Torrin seemed to be expressing was the blood problem. So after a year or so, he became independent of transfusions. But the doctor said to us in the room, if he makes it through, if he if he you know lives through that kind of early infancy period, and he'll he's likely to make it to primary school, but unlikely to make it to secondary school.
00:11:30
Speaker
When I pressed them for time, you know, because they didn't really say. So I said, look, you know, how much, what are we talking about in terms of time? We need to know. um And then that was the response to the consultant gave me at the time.
00:11:44
Speaker
And there's no cure. That's what they said. There's no cure. There is only very unchartered territory of possible treatment um in terms of symptom treatment. You know, not, yeah, and and not even any of that is really...
00:12:01
Speaker
known about or you know, peer reviewed and given the rubber stamp of, yeah, this stuff works. isn'st There's yeah there was none of that. Okay. There still is none of that as far as I'm aware.
Emotional and Family Impact of the Diagnosis
00:12:14
Speaker
So what, what impact did it have this diagnosis on, on the family? It's a big question.
00:12:25
Speaker
thats It had, the kind of impact that you'd imagine some you know a nuclear device being detonated you know in your life. you know there's I distinctly remember coming out of the hospital, and I have described it like a bomb blast and you know in the past, where I remember coming out of the hospital, and do you remember in ah kind of action movies when the main character might be getting shot at or something and all of a sudden everything just kind of slows right down, you know, and things are moving at this kind of like almost, you know, you can barely perceive people moving, but the other person's just moving around and dodging bullets and doing all that kind of thing. And that's when I think back to us walking out of the hospital,
00:13:17
Speaker
And the ground beneath our feet seemed to be kind of like moving around like waves. and But yeah, everything just seemed quiet and almost imperceptibly still.
00:13:29
Speaker
And yeah, it was just this complete, complete shock, you know, and not really being able to take it in, to be honest. and that In those stages, in those early days, it was a case of because of what they'd said, if he makes it through infancy, there we were thinking,
00:13:46
Speaker
Right. OK, well, we don't know whether it's going to be tomorrow or next week or in a month's time or in a year's time or in 10 years time. I remember coming across a Facebook group. There's there's a Pearson syndrome Facebook group. This is international because at the time of Torren's diagnosis, there was only 150 recorded cases in the world.
00:14:08
Speaker
So, and I remember discovering that there were kids, there were 10 year old kids, you know, alive in, in, in the U S and in the, and just kind of, when I realized, I um remember just kind of dropping to my knees at that point and just going, Oh my God, imagine if we had 10 years, you know, imagine.
00:14:29
Speaker
So kind of praying for that really, even though we knew we weren't, but we we didn't know we were praying for it, but that's kind of what we were doing. Yeah. So the early days was just utter shock. You know, you you go into this anxiety driven, adrenaline fueled survivalist survival mode, you know? Yeah.
00:14:49
Speaker
And so we, and we never, we never really came out of that. Okay. Yeah. yeah you know you're kind of always in it once a child of yours is threatened you you know their existence is threatened you're always on the lookout and uh so yeah you know we never really came out of that and and the the the impact of that diagnosis has changed our lives you know forever yeah and uh yeah, you know, there's more to be said about how, but yeah.
00:15:22
Speaker
Yes, yeah, and I'm sure we'll come to some of that.
Physical Challenges and Growth Impact
00:15:26
Speaker
So how did Turing grow then? did Did it affect his growing up and his development?
00:15:34
Speaker
Yeah, yeah, it did. Physically speaking, it it affected his development. Cognitively so, not at all. He was very bright. But physically speaking, around about the age of I'd say maybe maybe around five, four or five, you could see his peers at school beginning to kind of just like overtake him. And one of the one of the descriptions of the disease is what they call failure to thrive.
00:16:02
Speaker
So obviously, if you think about the body trying to produce energy, the mitochondria trying to produce energy, especially for muscles, which are kind of very high energy cells, ability to kind of thrive is threatened because of his, because of the mitochondrial DNA deletion. So, you know, they can't, they just, they just can't produce the amount of energy that his body needs in order to run around and like kids can, you know, endlessly in circles and also to grow because, a you know, lot of energy is needed in order to grow. So, so you could see that he was, he was getting, but it's not that he was getting smaller, they were getting bigger at a faster rate.
00:16:39
Speaker
and Yeah, okay. He wasn't growing or but putting on weight or anything like that. He was just doing it a lot slower than the other kids. and And also he would never but never have got to that point.
00:16:52
Speaker
One illustration is is ah around about the age of when Laurie, our daughter, his sister, younger sister, there's three and a half years between them.
00:17:04
Speaker
So you'd imagine, you know, young boy when she was born five he'd have been eight you know there would have always been a height difference but when she was about five and he would have been eight they were they were the same height and then she started to overtake him you know so that was kind of clear signs you know but up until sort of four or five you'd say to people oh you know he's got this illness and this is the out you know this is the the prognosis and And that kind of thing. And they'd look at him and go, well, he looks fine to me.
00:17:37
Speaker
You know, and that was you know and one of the most frustrating things to hear, you know, because, you know, as a parent intimately that that's not the case, but yeah. Yeah. Yeah.
00:17:49
Speaker
Yeah. So yeah we talked about growth and his development, so but but there was the life-threatening aspect of it. Did it have any like impact or is it something that that happened all of a sudden?
Health Decline and Sensory Loss
00:18:08
Speaker
No, it was ah after the transfusions that he was he was having to have became redundant, i.e. really interestingly, the bone marrow is the only tissue in the body that can that can correct itself in terms of, because, you know, bone marrow, well, I don't know how many of our cells, but a lot of our regenerative cells come start off in the bone marrow.
00:18:35
Speaker
Yeah. And so the bone marrow, as they come in, as they're kind of maturing, the marrow has a way of being able to select or deselect cells depending on how up to, you know, whether they pass inspection or not, you know?
00:18:49
Speaker
Yeah. So you have what they called wild type cells that have this mitochondrial DNA deletion in them. And the bone marrow can actually deselect those cells and say, no, you don't kind of pass muster.
00:19:06
Speaker
and then bring in the um the others. So the blood aspect was able to correct itself, but it's the only, the marrow is the only tissue in the body that can do that. So once it comes down to kind of muscles and, you know, sight and hearing and those kinds of things, then you're kind of that, that's, you're dealing with the the actual real, real thing.
00:19:28
Speaker
um so he had He didn't have an extensive list of symptoms, but what became evidence? So we had this kind of quite what I'd call like a golden period of time where The transfusions had finished.
00:19:42
Speaker
He was clearly kind of always a bit underweight and, you know not as big as any of the other kids around him. So around about the age of kind of one and a half to sort of like three or four, his symptoms are really minimal.
00:19:54
Speaker
Okay. He started to develop an inability to digest fat. So we had to give him something called Creon, which is like ah you take orally these enzymes which help you to digest fat.
00:20:04
Speaker
Mm-hmm. That went on for quite a two or three years um until we got to a point where his gut gain began to kind of slow down.
00:20:15
Speaker
His gut began to, um he he always had a propensity to be sick quite a lot. hi And his appetite just almost disappeared. His ability to to eat was dwindling to the point where mealtimes were becoming really, really difficult and kind of psychologically,
00:20:34
Speaker
It was becoming a bit like psychological warfare for both my wife, Sian, and for Torrin, you know, because she was trying to get to eat, obviously, as a mother especially and as a parent, watching your child kind of just lose weight and not want to eat anything is, you know, it's a big deal. So obviously we're seeing doctors all the time, regular checkups, all that kind of thing. And when he was about five, we had something called a gastrostomy fitted, which basically meant that it's a little tube that goes into the stomach, you know, with ah and you can attach another tube to it. So it basically meant that we could tube feed him into his stomach, you know, kind of various formula drinks. We tried smoothies and making our own stuff, um but it was, it was becoming apparent then that his gut was failing, I suppose.
00:21:30
Speaker
Although we were probably in, you know, we weren't aware of it at the time, but we were, trying desperately to just to get what what we could in there. But his ability to eat food just became virtually non-existent.
00:21:42
Speaker
Apart from chips. He loved to eat chips. He'd have like three or four, you know. So his ability to eat started to dwindle. And at the same time, his and sight and hearing started to deteriorate as well.
00:21:56
Speaker
So, yeah, over time, it was over a period of kind of like, you know, from the age of five until... until he died. It was just this very painful, painful for us and painful for him, kind of just slow decline when when all the other kids were kind of just, you know, in this exponential curve towards their prime.
00:22:19
Speaker
miss He was going in the opposite direction, you know, but cognitively completely but able to um see it and understand it to a certain degree and then obviously feel the pain of that, you know?
00:22:34
Speaker
Yeah. I was about to ask you about
Discussing Life Expectancy with Taurin
00:22:37
Speaker
that actually. So was he aware of it being life threatening or life limiting?
00:22:45
Speaker
Yeah, that was, that was a long-term nemesis of mine and a conversation that Sean and i had on a regular basis.
00:22:58
Speaker
And it was also conversation that we eventually did have with Torrin, but it was it was a really tough one. it was a really tough call because he was only, and well, he's almost 12 when he died.
00:23:16
Speaker
is It's his 14th birthday to tomorrow. So then, you know, it was a question of, do we tell this kid about their diagnosis? in order for us to lighten ourselves from the burden of carrying that, you know?
00:23:32
Speaker
Or should we give him the benefit of the doubt and not fear too much that he'll just fall into some kind of depression and, you know, can he handle it, you know, that kind of news?
00:23:44
Speaker
my My feeling was yes. ah My feeling yes, he could handle it. Sian's concern, obviously, as a mum was... was that she didn't want to, you know, that he was carrying enough as it was and burden him with any more, both valid points.
00:24:04
Speaker
So during lockdown, we we tried a kind of certain level of transparency where we just, we just said, um i remember we got to a point where we said to him that this this isn't going to go away.
00:24:16
Speaker
Okay. You know, this isn't, it's not as if you're going to get better from this. This is how it is, you know? And, We had that kind of understanding. So how old have we had been in lockdown?
00:24:28
Speaker
He'd have been nine. Yeah, nine years old. And then during lockdown, he got really upset one day and i asked him what was the matter. And he said, he looked me square in the eye and he said, he had so much courage, to that boy. He said to me, I don't think you're telling me you're painting the whole picture.
00:24:46
Speaker
I don't think you're telling me everything. And I... I had to say to him, all right, look, you need to, can you give me some time so that I can formulate a response to that?
00:24:58
Speaker
And I'll come back to you. Because one thing that we didn't want to do was kind of overtly lie. You know, we didn't want to, or deny. We were really conscious of not doing that because we'd seen other parents within kind of social networks that we were in.
00:25:16
Speaker
who were doing that kind of militant denial thing that they're not going to let their kid kind of even be suspicious of the fact that something might be up, you know, and go through all that effort to kind of cover things up and, you know, pretend, put on a show almost, you know.
00:25:31
Speaker
Yeah. And we we just knew that's not who we are and we're not going to do that. And so took me about a week, you know, and I had to seek some and some advice from trusted people. and And in the end, again, because Sharm was so,
00:25:46
Speaker
concerned that we'd be overburdening him, I came back and I said, look, this, and to be honest, when I say it now, you know, it's probably more to do with our cowardice than it was anything else.
00:25:58
Speaker
But, you know, you you and I can draw the conclusion from what I'm about to say, and I'm pretty sure he did as well, that, you know, I came back to him i said, look, basically, as far as your illness is concerned, it's not going to go away and it's going to continue to get worse.
00:26:14
Speaker
but we So one thing we made sure we we never did was close the door and on and and that kind of conversation. So when I said that to him, he sat for a while and obviously he was upset. And I said, look, is there anything else you want to say you want to ask?
00:26:30
Speaker
And I just remember him saying, no, I just want to watch TV. And I said, fine, you can watch some TV, you know. and And that was it for a while. But you know, you can already feel there's an elephant in the room, you know? Yeah. and So basically the way I look at it is that he was, he wasn't in the end, but for a while he was afraid to ask the question that we were afraid to answer.
00:26:52
Speaker
Yeah. Yeah. Yeah. I get that. ah But it was always have a heavy conversation. Really heavy. Yeah. It was, yeah was always there. And then, i mean,
00:27:05
Speaker
If you want, I can tell you about how it kind of actually it did happen. And bizarrely, it was about three months before he died, if not less than that.
00:27:16
Speaker
A very close friend of ours died. She was only 39. She had kind of multiple brain tumors and it was very, very quick kind of decline in her health. And,
00:27:29
Speaker
So she would have been the first person that Torrin knew that died, someone that knew in a kind of a more everyday sense. And we went to her funeral. And I remember one one day i was driving in the car and he was in the car with me. And and i was telling someone that hadn't found out about Emily's death that she'd died.
00:27:50
Speaker
And he heard me saying the words and he heard the person's kind of shocked response. And he said on the way back, we were just, I remember we were driving home. He said, I'm a bit nervous. And I said, why are you nervous?
00:28:04
Speaker
And he said, I think, I think I've made the connection between my illness and how long I'm going to live. Yeah.
00:28:16
Speaker
And I said, it was very calm. I remember I said, and, and what connection have you made? What what do you think? He said, well, I don't think I'm going to live that, that long.
00:28:30
Speaker
And this is the bit that gets me, he said, and and I said, and how does that make you feel?
00:28:37
Speaker
And he he had tears pouring down his cheek. And he said, ah ah guess I better make the best of it, Dad.
00:28:48
Speaker
Yeah.
00:28:52
Speaker
That's incredible. How... Yeah. You...
00:28:57
Speaker
As adults, we we think that children are, that they need to be taught everything, but then there are those moments where they teach you a lot. Yeah. Yeah.
00:29:08
Speaker
Yeah. And that, you know, it was a huge relief to have that conversation. And we were just moving into the house as as it was going on. And so we came in and we had to, obviously, Sean looked out the window and saw us both kind of, you know, in a bit of a state. And we came in and told her and,
00:29:28
Speaker
And it was a huge relief, you know, to have that understanding between the three of us. And yeah, but, you know, not one of us would have known that, you know, only a matter of weeks later that we'd be, we'd be in a world without him, you know? Yeah. Yeah.
00:29:47
Speaker
None of us could have foreseen that really. No, no.
00:29:53
Speaker
Wow. That's tough. Yeah. yeah Yeah, but you know i'm I'm grateful yeah um that we had that conversation. i'm grateful to him for having the courage you know yeah because ah we we he was more courageous than we were.
00:30:12
Speaker
Yeah, yeah, yeah.
00:30:17
Speaker
So I'd like to move to something yeah related.
Building a Boat in Taurin's Memory
00:30:22
Speaker
i know you're doing something incredible in memory of Torin. I'd love for you to share what it is.
00:30:31
Speaker
Yeah. Okay. Well, I think it's probably worthwhile just following on a bit from where we where we just were, but just to give the context, because otherwise there's another elephant in the room about the fact that, you Torrin actually died. and And then, you know, what I'm doing now is a response to that.
00:30:53
Speaker
Basically, the Torrin's gut was kind of on this progressive, degenerative kind of trajectory whereby We had two long hospital admissions, one in 2016, whereby he just couldn't hold anything down.
00:31:08
Speaker
Even when we were putting stuff into his stomach, it just kept coming back up. And we were in hospital for about 12 weeks. he was leaving He was losing a lot of weight. And then if somehow, for some reason, his gut just kind of kicked back in again and it started working.
00:31:24
Speaker
Working to the extent that we could tube feed him. He didn't all of a sudden just start eating, you know, burgers and stuff like that. But it meant that we could go back home and we could just kind of establish a rhythm.
00:31:38
Speaker
Fast forward kind of, well, two and a half years and and the same cycle started to happen again. So we ended up in hospital. And this time we were in hospital for five months.
00:31:50
Speaker
And the result of that was that he came out with something called a central line, which is a tube that is inserted into the chest, kind of tracks up into a major vein in the neck and then down into the heart.
00:32:03
Speaker
And that basically means that he could, he would, he would be fed intravenously directly into his bloodstream via bags of kind of bespoke nutrition made for him in the lab.
00:32:14
Speaker
ah that was the only way we could see that, you know, we could keep him nourished, you know, short of him becoming a breatharian, you know? Yes.
00:32:26
Speaker
So, so that was the situation. And that was in 2019, I think we came out and in,
00:32:37
Speaker
December the 16th, 2022, the line that he'd had for almost four years was beginning to deteriorate. We had it looked at by the specialist nurse and she said, look you're going to have, it needs to be replaced.
00:32:52
Speaker
So let's book him in to hospital and have to go into general anaesthetic, have this tube removed, have another one put in. And then, you know, we'll have another four years of of use.
00:33:05
Speaker
Seems very simple, right? And so, yeah, we went in. He'd been under general quite a few times before that. In fact, I don't know, like almost maybe 10 times he'd had general anaesthetic before that.
00:33:16
Speaker
So he goes in. He's in and out. It's very quick, just before Christmas. ah We're heading to family, not straight after Christmas. Long short of it is that four days later, he starts to spike a temperature of like 38, 39 degrees and becomes very incoherent.
00:33:35
Speaker
And we rushed him into hospital. Yeah, he had sepsis. i And we fought like hell for five weeks, pumping him full of, you know, ridiculously strong antibiotics.
00:33:50
Speaker
And um one night he had this kind of major episode and they couldn't save him. So that's that was the 23rd of January, 2023.
00:34:02
Speaker
So we're just hitting all the two-year marks now, the two-year kind of um anniversaries. And like I said, it's his birthday to tomorrow. And there are quite a few connections to why I'm doing what I'm doing.
00:34:20
Speaker
I'm building a boat for Torrin, and not just any boat. It's a kind of a clinker built, which is a traditional wooden sailing dinghy. Because just before he died, we were asked by one of the staff at Bristol Children's Hospital, who he was very close to,
00:34:36
Speaker
ah play therapist called Katie Lane at Bristol Children's Hospital. And those guys are heroes, you know, the guys in the hospitals there, you know, they're not medical staff. They are generally generally younger folk, but they are without them, the doctors and nurses would have such a hard time trying to, you know, they would, they would basically be kind of brutalizing the kids.
00:35:02
Speaker
you know what mean? More. But with the skills that these guys have, their ability to kind of negotiate and kind of put things into kids' language and kids' terms that enables the doctors and nurses to do what they need to do is just, yeah, it is incredible. and They don't get enough credit for what they do.
00:35:20
Speaker
But yeah, she basically was trying to get Tori on one of those Make-A-Wish Foundation things you know, charities so that we could go away on some holiday. Sean and I had always kind of held them at arm's length, part part denial, but also the idea of, you know, in all expenses paid holidays to Disneyland is just not our idea of a good time.
00:35:40
Speaker
Yeah. But um so fear fearing that was that exact response from Torrin, you ask him and I said, yeah, of course, I'll ask him. And I asked him, Torrin, if you could go anywhere in the world, where would it where would you most want to go?
00:35:55
Speaker
And without looking up from his book, sitting over there on on the sofa, he just said, Windermere. kind of did a double take and said, I'm sorry, you know, I did say anywhere in the world.
00:36:06
Speaker
And he said, yeah, I know, i heard you perfectly well the first time. eyes I want you to take me to Lake Windermere and want to sail to Wildcat Island like they do in the book Swallows and Amazons, which is one of his favourite kids' books.
00:36:22
Speaker
So that's what I told her. And, you know, sadly, we never got to do that with him. And there's lots of other themes that kind of fed into this. on his funeral, we, we paddled ah him in four big 10 man canoes down the river dark from Totnes all the way down to Sharpen where he's buried.
00:36:43
Speaker
So there's kind of river boat themes that kind of just weaving their way in and out of my life, Torrin's life and death. To me, one of the things was, well, we could just go up to Windermere and hire a boat, but it just didn't seem the right thing to do. I,
00:37:01
Speaker
Somehow, i being a woodworker, being a kind of ah you know big a creative person, just like Sian is also, it just felt like the right thing to do to make something yeah in honour and of him and in his memory and kind of fulfil his dream in the boat that we've made for him.
00:37:26
Speaker
We don't know what it is. you know We know what we'd like it to be and we don't we know what... to a certain extent why we're doing it. But all those things are kind of hypothetical, really. Yeah, yeah. Because, you know, we're just at the very early stages of actually building the boat.
00:37:40
Speaker
You know, we're yet to sail it if it floats, fingers crossed. So it will be what it will be once we've done those things. If you know what mean, it's too early to to say what it is or to pin it down like that.
00:37:55
Speaker
we just know this We just basically intuitively know that's something we've got to do. And that's kind of an indicative of how we lived our lives with him when he was here. it was very intuitive. we yeah know We decided very consciously not to go on a kind of crusade, a cure-finding crusade.
00:38:14
Speaker
We knew there wasn't one. and we We weren't one of those, and I'm not saying that people who do this are wrong. I'm not saying that at all because we know plenty of parents whose kids have been, you know, really ill and who've dedicated their lives to trying to raise money, to plough into research, to kind of try and maybe not for their kids, but for the kids to come, you know, and I absolutely yeah respect that and admire it.
00:38:40
Speaker
But for us, our we just had a strong sense that if we did that, we'd be missing out on time. you know We decided that we would just kind of hunker down and make the most of what what what was coming what was given to us. you know And so... It's interesting.
00:38:58
Speaker
Sorry to interrupt, but it's interesting because tell me if I'm completely wrong here, but like you just said time's short and your time with Torin was was short overall.
00:39:09
Speaker
but now it seems like with the boat, you want to take your time to do it right. Yeah. And that now you have the luxury of time in a way. Yeah.
00:39:20
Speaker
Yeah. I suppose there is an aspect of that. Yeah. I've not, i'd not seen it that way. I do feel, I feel a pressure, you know, not necessarily in time, but I just want, I want to get on with it. And all these other obstacles are kind of being thrown at me and you know, ah you know, I have to fight them off, not fight them off. It's,
00:39:37
Speaker
I don't if you ever came that came across that kid's book that we're going on a bear hunt. you know that one? Oh, yes. I've read it many times. Yeah, exactly. And I have heard that the people who wrote that book are being sued by some Native American tribe, tribal people, because that's...
00:39:55
Speaker
they're claiming ownership of that that kind of wisdom but um but it's wisdom all the same right you know the fact that you can't go over it you can't go under it you can't go around it you've got to go through it and i that's that's very much with me you know a lot of the time um through all the trials we've been we've been through that thus far and And also with all these obstacles that being thrown at me to get on with the boat, you know, it's like, you just got get on with this one and then you you'll get there. You know, there's no there's no pressure. So yeah time is short.
00:40:30
Speaker
We just like to kill ourselves that it's not, you know? Yes. Yeah. Yeah. And it's a perspective that a lot of people don't have. Yeah. You need to be facing those challenges to, to really appreciate it, I guess.
00:40:47
Speaker
Yeah. to carry on in the theme of time. I think that's all we've got time for today, and unfortunately. and I don't want to keep you away from the boat too long either. but But I really appreciate your time. i ah find it incredible, if I'm honest, what you're doing.
00:41:07
Speaker
and But at the same time, I completely understand it, appreciate it. And i think it's an amazing journey. And I can't wait to see the boat once it's built to hopefully I can come and see it and yeah and yeah see it float on the river or or a lake.
00:41:29
Speaker
Yeah. Yeah. You'd be most welcome. Well, good luck with it. And thank you. Yeah. Thank you, Sommé.