C (6:58)

Yeah.

B (6:59)

And I am the, the biggest kind of scaredy cat when it comes to my children. You know, ordinarily if they bump the head or the trap the finger in a, in a door like, you know, like little kids do, I'd scream and go get that kid to hospital now. But for some reason I, I just said, ring the doctor. She needs to get to doctors. We secured her an appointment for the following day. I have to be careful what I say because she's got an inquest coming up on the 16th of September. But I know my mother and my wife took Lila to the doctors and they explained the symptoms. She threw up three times that morning, you know, vomited three times. And the third time was in, actually in the surgery. And my mother pointed out that's the third time today she's been sick. So obviously Emma and my mum went in with Lila to the doctors explaining that she's having more wet nappies. She's been lethargic, she's not been a normal self. Obviously she's vomiting, she hasn't had a bowel movement since the Tuesday, Tuesday night and she appears to have lost weight overnight and she's, she's drinking a lot more. She's. And my mother interjects and said she's actually asking for water now. What two year old asks for water? You know, it's all about juice in it now. I, I've had it drummed into me over the years, say, don't look at Dr. Google, don't look at Dr. Google. You know, I wish I did because the doctor just checked her vitals and surmised that all she had was tonsillitis. We brought her home. Emma took her to bed quite early, but we made it. We made a decision that Emma would stay in bed with Lila in our bed. And I said, that's okay, I'll sleep downstairs on my recliner chair. Periodically, as I carried her up to bed, oh, that's another thing I forgot to mention. She stopped talking on the Thursday. Now I thought I was frightened to death at the time that she'd all of a sudden gone from somebody so bright and vibrant to someone that's gone completely non verbal. But when we got told she had tonsillitis, it kind of changed our perceptions of care for Lila because the doctor said if, if she hadn't got better within 24 hours then call 11 1, which is like the quieter version of 999 or 911. You know, it's like ringing up, I've just got a concern, you know, sort of thing. And then they give you advice accordingly. We were relieved that we, you knew it was tonsillitis. And she was prescribed something called amoxicillin, which is basically penicillin for kids. It's like that banana flavored stuff you get. We started giving her that and it said carry on giving her children's paracetamol, obviously. What's, what's in children's. What's children's paracetamol. Full of sugar. I started carrying her up to bed and she started shouting, mummy, Mummy, Mummy. We thought, we thought, excellent. She's talking, she's talking again. She's, you know, she's articulating again. That's brilliant. Went to bed. I last checked on Emma and Lila at about 8pm and Lila was sleep. While Lila was sleeping she was making a little arring noise. And again we attributed that to the fact that she's articulating that the tonsils are hurting, but no more of it. Emma checked on her again at 10 o'. Clock. Still breathing, still temperate. Last checked on her at quarter two in the morning. Still breathing, still temperate. I wake up about quarter four, come to bed about quarter past four in the morning. I got into the bed, I moved Lila because she was like, I thought she was sleeping in a horizontal position. I moved her from her nappy for some reason. I lay in bed and next thing I know I felt something cold against me and I thought it was Lila's milk bottle but it wasn't, it was her arm and she was freezing, she'd already gone. So I think in that 3/4 of an hour where, 3/4 of an hour where Emma had last checked on her. I think she'd slipped into a coma and just passed. Even our dog was in the room. We got a border, we've got a border collie. We know if Lila would have suffered at any point, the dog would have been leaping on the bed, jumping all over Emma to get her up, you know and yeah, she just literally passed in very quickly. Yeah.

C (11:38)

So, you know, we, John, take a second. It's okay. You can collect yourself. It's fine. I, I want you to know that when, when someone reached out to me to have you on, I had no idea this was also fresh in your life. I, I, I really didn't. Are we talking about five months ago?

B (11:57)

Just over four months now.

C (11:59)

Four months ago. Okay.

B (12:00)

Yeah, yeah. She, she passed away on 3rd of May. We even said when was at the hospital because whilst there was trying to resuscitate her, we even said, you know, when she was officially pronounced, asked how when we, when my wife and my mother went to the GPS and said she's got this, this, this and this. Did she only surmise it was tonsillitis?

C (12:27)

Yeah.

B (12:30)

And obviously that's what basically what happened. Naturally, we're devastated. But.

C (12:39)

John, this is more common than you think. I know that obviously type 1 diabetes is not a thing you were aware of prior to that.

B (12:48)

Absolutely not.

C (12:48)

Yeah. But I can tell you that misdiagnosis is at this point are fairly common. And even the things that you describe that you saw but didn't know what to make of it all that is incredibly common. I know that's, I don't believe anything I'm going to say to you is going to be comforting, but.

B (13:10)

No, no, no.

C (13:11)

But I can tell you that my daughter was diagnosed when she was two and just after her second birthday as a matter of fact, my wife and I saw signs and you know, we look stared at her for a long time too. Weight loss, wetting her diapers. She's like voraciously hungry but not going to the bathroom. Like anything you probably experienced with your dear Lila. I imagine I experienced with my daughter and my wife did too. And we just happened to have a moment where it just struck us that we thought it was diabetes. That was really it. Yeah, we didn't know either and took her to the hospital and they told us this, that you know, she was very probably 24 hours away from where your daughter was.

A (14:01)

And to later say that I did.

C (14:04)

Something right or you did something wrong is ridiculous. We got lucky and you didn't we would. You know.

B (14:12)

Yeah, that's. That's part of one of the things that resonated with when I first heard about you, and. And the reason that you set up the podcast was because Lila was three weeks into a second birthday and. Yeah. And I just. I can't believe how people just don't actively listen anymore when you display. And there's so many stories of you're an overprotective mother or you can't have diabetes because you're fit or you're well, or you can't because there's no history in the family. That. That's. I mean, that irrelevant question that GPS ask, is there a history of diabetes in the family? Well, 80 of newly diagnosed people with type 1 diabetes are babies to it themselves. It's just one of them things. You ever get it or you don't. I mean, it can run in families, obviously, but 80% of new cases are like that. And what happened, Scott, was in the aftermath of Lila's passing, you know, I said, I'm. I'm gonna. Sorry. I said, I'm gonna fight for every fiber of my being to. For change. Because all of a sudden, it got so strange online, on Facebook and things like that. It almost became like a me too thing. People was reaching out and saying, look, the same thing happened to us. And the only difference between you and my daughter or my son was when I woke up in the morning, my child was barely breathing. Yours just.

C (15:44)

Yeah, it just happened faster or bad time even. Just that you were asleep. I mean, John, there's. There's no way to make sense of it, really.

B (15:52)

It's. Well, with. With Lila as well. She got. We found out on the interim death certificate that not only did she have undiagnosed type one, and obviously she died of diabetic ketoacidosis, but she had a gastrointestinal bleed and COVID 19. So we think what's happened is that sniffle that she had on the Monday and the. The rosy cheeks. We think that was the start of COVID And what's happened, we think, is it's attacked a pancreas, because you know what Covid can do? It can attack any part of your body. You can get cases of people getting Covid, and it just doesn't touch the sides, and you're like, what's this? But then you can get one case of COVID and it can just attack the wrong part of you, and then it's critical. So with Lila, it happened so rapidly, but the people that have been reaching out to me. This is just from people in the United Kingdom. I've had about 220 emails so far. Of them, 220 emails, only two have been diagnosed at the initial point of contact with the gp. The rest have been diagnosed in critical care.

C (16:59)

Yeah, that's pretty much how it works. And there's, you know, there's, it's, it's such a tough thing to talk about because as you're sitting here, probably all you can think about is somebody would have just checked her blood sugar in the office, you would have known days before and they would have very likely been able to help her. And you're going to hear people make the counter argument, which is, you know, for every kid that comes in, in your daughter's situation, there's probably a thousand of them that don't have diabetes. And then, yeah, yeah. And it's not of any comfort to you or, or any reason not to to do that finger stick and help the few that are in that situation. I've, you know, had this conversation over and over again with people over the years and I can see both sides of why it happens and why it, why it doesn't happen or why it should happen and why it doesn't happen. Yeah, I can't tell you how sorry I am. I mean, honestly, all I can think about sitting here is giving my daughter a hug when she gets home, you know, and. Yeah, even that terrible to say out loud right now while I'm speaking to you.

A (18:01)

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B (20:17)

No, Scott, I've been saying, I've been saying that to people every time I've had an email come through it. The. So the emails that I get sent are so traumatic for themselves and they're incredibly brave for writing to me, you know, and, you know, I, I keep asking people, just, just send them because change needs to happen. And I do say to them, just give your daughter or your son a massive cuddle from us. You know, I agree, a little finger prick cost pennies.

C (20:44)

Yeah.

B (20:45)

You know, getting diagnosed in critical care costs hundreds of thousands, you know, to the National Health Service. God knows what it's like in your country with your insurance system and everything. You know, how much I mean, I mean, money costs nothing. Money means nothing when you're saving your child, obviously. But I think what the UK government don't understand, all the NHS don't understand is, you know, if you do this little finger prick test and you get, you get people out there that say, well, it's traumatic to the child, give over. Don't be silly. You know, give them a lollipop afterwards, you know, they'll be, you know, they'll be absolutely fine. It's, it's, you know, you get, you get your, your jabs when you're a baby that makes them cry. What difference does it make? Just a little finger Prick. Not that Anybody wants type 1 diabetes, obviously, but the earlier someone gets diagnosed, the easier it is for that person to manage the condition safely. You know, if you diagnose it, dka, it can be, it can be much more difficult to manage your blood glucose levels. And not only that, it can cause organ failure, developmental delay. I mean, I'm a rehab officer for visually impaired people. So basically I, I help restore the skills of people with visual impairment. And obviously one of them conditions is like diabetic retinopathy or maculopathy. People don't understand how serious it is. And it's not just the physical impact it has on people. Yeah, the patient themselves, but it's, it's the emotional impact of going through on the person and, and the families, the ripple effect it causes and the parental guilt. It's horrible.

C (22:28)

Right? Yeah. No, there's, there's no argument for not knowing sooner. Knowing sooner is just always going to be better. So, John, if we can. I don't know if we're really pivoting, but, but to, to leave her story there for a second and we'll come back to it and what you're trying to accomplish, would you mind if I asked you some stuff? Personally, I'm. I'm interested to know. I mean, you're a pretty young family, right? You had a four year old and a two year old. How long have you been married? How old are you? How old's your wife?

B (22:56)

Funny story, just really strange, actually. I met Emma on a dating app called Bumble. I don't know if you've heard of it.

C (23:07)

I have.

B (23:07)

We first met, we went for a coffee on our first date. We got chatting. We really enjoyed each other's company. On the way out the coffee house, I said to Emma, do you mind, you know, do you mind if I see you again? And she said, yeah, yeah, I'd love to. So do you mind if I give you a kiss, you know, on the cheek, A little peck on the cheek sort of thing. She went, yeah, okay. And at that point I slipped on the doorstep. I fell forward and I had butted her. I thought, there's no way she's, no way she's gonna say no now. And then we, obviously we fell in love and then we. Jack came along in 2020. He was a Covid baby. And there was a lot of trials and tribulation with that as well because I couldn't be present at the scans and things like that, so that was a bit heart wrenching. But when Lila came along, found out Lila Was pregnant. Sorry. Emma was pregnant with Lila. When I was about to start university to do a degree, apprenticeship in rehabilitation. Visually impaired. I asked Emma, do you want me to defer? She went, no, you go for it because it's for our family. Lila came along two months before me and Emma got married in 2023. So she was the youngest bridesmaid in town. And yeah, the. The dynamic it was. Was the perfect dynamic. I mean, our children have wanted for nothing. We've done nothing but protect them throughout their lives. You know, whenever the chips are down, we're there for them.

C (24:37)

Then something comes along that you just can't really. You can't protect them from.

B (24:43)

Exactly. Yeah. I mean, Emma at the moment, she's. I mean, Emma lives with anxiety. Diagnosed anxiety. She's usually the crier of us too. You know, she's the one that does the crying. You know, you only have to say boo to her sometimes. You know, she's so consumed of anger at the moment.

C (25:06)

Well, that's my question to you, really, is that how has this impacted you and her and Jack?

B (25:11)

In all honesty, it's made us stronger as a group, as a family dynamic. Jack, he's gonna get some early help from the local family hub centre. Jack was asking questions when Lila first passed about, where's Lila's body? Where's Lila's head? And I'm like, the poor lad. The poor boy doesn't know what to say. I mean, when we had to sit him down, I sat him on my knee, and then we sat him in between me and Emma and we said, we've got to say something to Jack now that's gonna impact him for the rest of his life. So I just. I thought on my feet and I thought I did okay. I said, look, you know, when the ambulance people took Lyna to hospital, said, unfortunately, she was too. She was just too little. And a little body, a little hat, couldn't take it anymore. I said, but before she went up to heaven with the angels, she told us something. On the way up, she said, oh, what? I said, that she's left. She's left mummy her eyes. She's left daddy her heart, and she's left you her courage. She said, what's courage? I said, bravery to be brave. And. And she's left you a shadow. So she's always with. Yeah.

C (26:40)

All right, John, you did a good job, man. That was great. That's. That's lovely.

B (26:43)

I know, I know. I mean, I don't know if people believe in God or heaven or anything. That's people can have their beliefs that, that's absolutely fine. You know, I've got no qualms with that. But I think when you're a child, you need to teach that child that there is a better place to go to. And, you know, and you also teach them to respect the police and respect people in uniform, like the fire service. Sure. You know, and, and that, you know, your jeep at your doctor and, and things like that. And it was only until. Because Jack thought she'd died of tonsillitis. A week after Lila died, he got the chickenpox. And the first question he asked me was, daddy? Yeah. Am I going to die?

C (27:29)

Oh, geez.

B (27:30)

I said, no, you're not gonna die, son. You're not gonna die. So we, we told him when he broke off from nursery kindergarten, we sat him down and we explained to him that Lila didn't die of tonsillitis, that she did have tonsillitis, but she died of something called diabetes. And I tried to explain what diabetes was in layman's terms, but to talk about beta cells and pancreatic failure and things like that to a four year old is no use, no ornament. So I just said he had, she had so much sugar and she couldn't burn it off, you know, because that was the only way he could really explain it to him with him being 4 years old.

C (28:14)

Well, yeah, I mean, there's no, I mean, there's not a lot of good ways to explain something that's serious or finite to a four year old. I think he did a nice job. I mean, I'm sure it's going to be a thing that is going to come up over and over again. You're probably going to have to redefine for him as he gets older. And truth be told, you might have different perspectives as time moves on as well that you'll share with him.

B (28:37)

Indeed, indeed. I mean, we didn't say at the time that. We just said that at the end of the day when we went to the doctors, the doctor didn't spot that she had it. And you know, I did say that doctor was naughty or anything like that.

C (28:49)

Right.

B (28:50)

I didn't want to play a blame game or anything like that because I didn't want him having, I didn't want him to lose faith in the health system.

C (28:58)

But do you, do you have those feelings, John? Does your wife feel that way?

B (29:02)

Yeah, we do at the moment, yeah, we do. We feel badly, let down. Obviously, again, we can't go too much into it because we've got the inquest coming up, but we feel that, I don't know if you know much about the healthcare system in England at the moment, but primary care, that's your gps and your district nursing and things like that, it seems to becoming more of a business now than what people actually signed up for, you know, which was to work with people with dignity, empathy and most importantly, care. I just think that the country itself, we're, you know, across the pond, we're only a tiny island really, but we've got 80 million people living in it. You know, that's a lot of people for a small island. And I think as time's gone on, the NHS is a wonderful system, but I genuinely think it's broken because we haven't got enough infrastructure there, infrastructure there to support the needs of people anymore. And I think that reflects when you visit in a doctor, because it's like, I don't know if you're like me, Scott, but for me to go to the doctor myself personally, I've got to have about four or five things wrong with me before I go because I'm a proud man. But if you go there, you talk about more than two things. Basically talk to the hand of face ain't listening. It's like, I can talk to you about these two things today. If you want to talk about the others, you need to book another appointment now. And that's quite a poignant comment because the signs of type 1 diabetes are 40s. You've got four things going on, you know, and particularly with children. You can't mess about with children. You can't grant a child a seven minute appointment because that's on average, that's how long you are in with the doctor now. Indeed.

C (30:57)

Did Lila have tonsillitis?

B (31:00)

She did, but this is the irony, she was prescribed penicillin for tonsillitis. Now, penicillin is an antibiotic, it's to treat bacterial tonsillitis. She actually had viral tonsillitis?

C (31:15)

Yeah. They don't know, they're just guessing when they do that. If they don't do the test. If they don't do the test. So you think the doctor saw the tonsillitis and was like, well, this is obviously the problem and just didn't look any further.

B (31:26)

I'm satisfied. Yeah, yeah, I think she saw that. I'm satisfied that she's got that. I mean, she checked her vitals, you know, she checked her oxygen levels and things like that. She said that a pulse was a bit fast, but that's normal. If she's got a virus or what have you. But looking back now, I've one of Lila's godfathers, he was a medic in the paratroopers and he said the reason that we know, we now know that their pulse was getting faster because she was going into diabetic shock.

C (31:55)

Yeah. The ketoacidosis is there.

B (31:58)

Yeah, yeah.

C (31:59)

The decay is. It's, it's a devastating thing. I just interviewed a woman recently whose daughter, even after they finally did figure out that she had diabetes and she was on a week long journey like you were, where they kept missing it, she has permanent damage now through her esophagus and you know, she was, she was vomiting up dead tissue from the DKA and it's, it can be devastating in, in many different ways.

B (32:24)

Send my love to that family.

C (32:26)

Of course, of course. So, John, I mean, you're in the middle of your grief, your wife you describe as angry. Is there something you're trying to do with all this? Like, I mean, I don't understand. I mean, you are in the position that every one of us finds ourselves and we don't know what we would do if this happened to us. Right. So what is it you're doing with all this? The grief and the anger and I'm assuming the hopelessness that you feel right now? Where are you trying to focus it?

B (32:51)

I'm trying to turn it into a positive. I think Lila would want me to fight for the children of the United Kingdom, if not the world. I think the world needs to know about Lila's story because if it's happening in the uk, it must be happening in other places. So basically I've started a campaign called Lila's Law in the United Kingdom. I've just noticed as well recently that there was another Lila's Law campaign going on in America over something really horrible and harrowing that happened to a child in the United States. Completely different subject matter and I won't go into that. I'm sure you can Google what's going on there. But, but basically with Lila's Law, it would ensure that routine diabetes testing, urine and blood for children presenting with relevant symptoms of the 4Ts, any of the 4Ts. Because if you look, I don't know if you have something similar in the, in the us, but there's something in the UK called fast. It's symptoms of stroke and if there's displaying any one of them symptoms of fast, F, A, S, T, face, arms, yada yada, any one of them symptoms, the doctor goes straight to hospital with you why aren't they doing that with other things? Type one.

C (34:09)

Yeah.

B (34:10)

And for some reason, I think, look, not that type 2 isn't dangerous, but I think a lot of the focus is going on to type 2 now because of the obesity rates and everything. There's a lot more people getting type 2 diabetes now and I think it's putting type 1 to the back of the queue. We know that Type one, you've got to act fast with Type one because it's a silent killer, you know. Lila's law would also ensure greater awareness and adherence to what we call NICE guidelines among healthcare professionals. So, like, every practitioner has guidelines, the tragedy is the dots tend to follow them or protection of vulnerable children who cannot articulate their symptoms. I mean, if you look in. In Lila's case, she was bright and she was articulate, but we know now that the reason she stopped talking in the first day was because she was desperately trying to reserve her energy. Yeah, I knew Nothing about type 1 diabetes before LIDAR passed. I learned very quickly afterwards, you know, we are also advocating for inclusion of type 1 diabetes information in what you call the red book. Now, the red book in the UK is basically what health visitors have and provide a mother with. And in that red book it tells you about certain conditions to look out for. And I think because it's becoming more prevalent, Type one's becoming more prevalent. I think it's important for them to include it in the red book. The reason I'm saying things like that is because I think education around the matter is desperately poor among GPs themselves, because I got told by a prominent member of The NHS that GPS in the United Kingdom diagnose an average of one person's in their career with type 1. Yep.

C (36:09)

Because it's so infrequent, or because they don't catch it as much.

B (36:12)

The answer to that, I don't know. But put it this way, there's over 400,000 people in the United Kingdom, at the last estimate, living with T1D. Of them, 400,000 people, 38% have been diagnosed at the point of DKA. That's all. That's just under half. It's not good enough.

C (36:33)

Yeah.

B (36:34)

Now, the education around the matter in primary care is. Is clearly not good enough. And also, I admit myself, I think education among the general public, geo public, you know, that is not good enough. And, and it's. There's also misconceptions around Type one. You know, it's like, maybe it's because your child's eating too much sugar. That's rubbish. A child could live on sugar and not catch type 1. Something quite key, I said to somebody recently was the 4Ts is a wonderful concept. The only downside is it's quite. This might sound controversial, but knowledge of the 4Ts is quite a tribal thing in essence. Because I think the only people that really know about the 4Ts are those that are either directly or indirectly affected by the condition. And I think anybody that has no knowledge of it at all or doesn't have friends with it or family with it, you ask someone about the four T's, they're like, what's that? And. And that's why I think if you get education amongst the general public as well, when you send your child to the doctors, you say, my child is weighing more, my child is tired all the time, my child has lost weight and my child's constantly thirsty. I think my child has type 1 diabetes. And that plants a seed in the head of the doctor to say, I would like you to perform a test. So if you've got that working both ways, the twin shill meet, you know, but there's too much ignorance from gps and I've seen a lot of this. I might have repeated this already, but you see a lot of this from the emails I've received. It's like, well, you know, no, you've got no history, so you won't have it. It's just a virus. Stop being overprotective, you know?

C (38:30)

Yeah.

B (38:31)

And this has been going to over 40 years because one of my best friends has type 1 diabetes and he went through a similar experience to Lila and me. He said to me, when Lila first passed, he said, I thought I was the only one. And it's 20, 25. Why is this still happening? It's not 22, it's not 1921 anymore.

C (38:52)

Your friend had a similar situation.

B (38:54)

Yeah, well, he. What happened with him? He'll be happy for me to discuss it. He got many. When he was 18 months old, he got meningitis and he was admitted to hospital, spent three weeks in hospital, came home and then a few months after that he started displaying the 4Ts. It was kind of like, don't worry, it's just the after effects of the meningitis, it's just this, it's just that, oh, stop being overprotective, Mum. It's just he's just getting over the meningitis, blah, blah, blah. And he was lucky enough to visit a GP who lives with the condition himself. He took one look at him and Said. Right. Recognize that we need to get. We need to get him to hospital and get him on a program of diabetes.

C (39:34)

John, it occurs to me, because you're in England and a lot of people hear this in other places. Four T's, toilet. Thirsty, tired, thinner. Right.

B (39:41)

Exactly. Yeah.

C (39:42)

Okay. Okay.

B (39:42)

I just.

C (39:43)

We kept saying it, and I thought maybe we should make sure everybody knows what it means.

B (39:46)

Just to clarify. Yeah. I did start a YouTube video shortly after Lie in the past, because I think it's. It's. And you'll probably agree with this. Scott mentioned more about. Along the lines of looking out for the signs in babies and toddlers if they're having more wet nappies. So it might sound disgusting, but smell them. I don't know if you have something called Sugar Puffs in America, but they're like a breakfast cereal. And the smell, the really sweet. It almost like a popcorn smell.

C (40:14)

Sure.

B (40:14)

If they're nappy or their diaper smells of popcorn, just go to the hospital. If the breath smells like pear drops, take them to hospital. You know, like that sickly sweet smell on the breath. Now, we didn't even experience that with Lila, you know, the smell on the breath. But that's a sign, you know, that's.

C (40:34)

One of the ways we figured out my daughter's situation.

B (40:36)

Was it?

C (40:37)

Yeah, the breath, you could. It just smelled fruity. What is it you actually smell like acetone or something like that. I'm not sure. What is the word.

B (40:44)

Yeah, well, basically it's the ketones trying to get out the system, isn't it? You know, so, I mean, when lila died, her HB1AC levels was 89 over double the threshold, and a ketone level was at six. Now, the medical emergency is. Is three, you know, because it's. It's on like a scale of 1 to 10. I've seen people going in with keto on levels of eight, you know, and it's just crazy. So the YouTube video was mainly around checking for signs in toddlers and babies because obviously they can't advocate for themselves. So look out for these. And fortunately for your Scott, you've got that fruity smell on the breath. Had you not got that.

C (41:28)

Yeah.

B (41:28)

You could be in a different situation yourself, John.

C (41:31)

I mean, it's. It hasn't been lost on me for all those. These years that we could have missed a couple of these things, and Arden's outcome could have been much different. But talking to you about it brings it, you know, very forward for me right now, sitting here thinking it's hard not to be. It's hard not to put myself in your position and wonder what would have happened if another day would have gone by.

B (41:53)

Exactly, exactly. And you know, your lovely daughter's come out the other end and, you know, I hope she's thriving.

C (42:00)

She's doing pretty good. Thank you.

B (42:01)

How old she. How old she now, Scott?

C (42:03)

She just turned 21.

B (42:05)

Wow. Wow. She. I bet she advocates for T1D community as well, didn't she?

C (42:10)

She does her stuff kind of quietly about diabetes. I think maybe I'm the one that's more out front, but she's got her things she's involved in. It's also not a. Not a huge part of her day to day life. You know, it's a thing she, I think, manages pretty well. Lives with pretty well.

B (42:25)

I thinking. I don't know, I mean, I don't want to speak on. On behalf of. Or anything, but I think, I think with, with. In her situation, I think it's. She's probably never known any different.

C (42:35)

That's pretty true. It doesn't stop it from being burdensome, but definitely doesn't have a ton to draw on that isn't diabetes.

B (42:43)

Yeah. Yeah. I mean, imagine I feel sorry for anybody that I have a degree of empathy. Feeling sorry is not the right word, turn a phrase. But I have, I have a degree of. I have empathy for everybody that, that lives with the condition and their daily struggle. But I can. Could you imagine getting it when you're like 14 or 15? And I think it's shocking, you know, what it's like for teenagers as it is, you know?

C (43:07)

Yeah, no, trust me, I believe that no matter what age you are, it's shocking and life altering. It just, it just really is anything chronic, which is now, you know, John, I mean, I'm certainly not a friend or somebody who has any right to be worried about you, but are you guys doing something? I mean, I love what you're doing, you know, for Lila's memory and for other people, but I mean, it occurs to me that, you know, if diabetes is a chronic illness that's going to take people a lifetime to deal with. I would imagine that losing a child is the same thing. Right. This is not a thing that you're just gonna wake up one day and it's not just gonna be gone.

B (43:48)

Yeah. How old are you?

C (43:49)

Did I ask you?

B (43:51)

I'm 44 now.

C (43:52)

44. You have a long time left, you know, knock on wood. Right? So you're raising Jack, right. He's four. So like, how do you. How do you make all this livable? Is livable the right word?

B (44:05)

I'll be honest with you, Scott. I think if it wasn't for Jack, we'd have probably drank ourselves into oblivion or. Jack keeps us going, our dog keeps us going. The love is still there in the family. You know, Lila comes to me in my dreams. She never ever came to me in my dreams, and then she does now. And we're going through counseling at the moment. You know, I wake up at key trigger points. The subconscious isn't turning off when I go to sleep. I wake up at half past two, which is when we believe she probably passed in the morning. I wake up at half past four, which is when we set off to the hospital with her. And I wake up at 25 past 5 in the morning and I just can't get back to sleep. But what we do is we have a ritual. We've put a lovely little bench outside our front garden. We've planted rose bushes for her. Every morning we open a bedroom door and say, good morning, darling, to her. Just, I know it might sound silly to you, but it's a big thing to us. So, yeah, we. We have coping mechanisms. We tell each other we love each other every day. Our Jack keeps us on our. On his toes and he still makes us laugh every day. And I think our Jack is going to turn into a fine young man. I think even if Lila had survived, I know she'd have been an advocate for the T1D community. She'd have been on the campaign trail with me when she got old enough. And one thing I must say, Scott, is somebody said to me when I was going on Facebook and saying, look, I'm starting this campaign called Lila's Law. Someone said, you know what, John? You need to think about what to do. You need to go on Tick Tock. And I'm like, I'm 44. I'm 44 years old. I can't be. I can't be dickied about in videos and things like that. No, but that's where you seem to get attention now, and traction. So I went on to Tick Tock. In the end, I thought, I'll bite the bullet and I'll do it. One thing I've realized since joining Tick Tock is what an amazing community the T1D community is. There's such, you know, and I'm proud to advocate for them.

C (46:25)

Yeah.

B (46:26)

You know, and they're so supportive. They're keeping me going, too. When I went to Parliament in August, I remember putting a Tick Tock up. And I was outside Big Ben and all I remember seeing was people was asking me, are you scared that you're going into Parliament to talk to government officials? And I just said, no, I'm not at all. At the end of the day, I'm stood here standing on the shoulders of 400,000 C1D giants with Lyla holding my hand, watching over us. And I will continue. Sorry, I will continue to fight for the T1D community in the United Kingdom and worldwide if need be. Because we also believe that there needs to be early detection programs going in place. There's a clinical study going on at the moment called the ELSA study. And I will mention this man's name. He's a wonderful man. His name's Parth Narendran. He's a researcher, is a professor in diabetes, and he runs something called the ELSA study, which is basically early detection surveillance for autoimmune conditions. And he. I've met with Parth a couple of times. He's a lovely, lovely man. But unfortunately, this is. 20,000 children in the United Kingdom have signed up for it. But as Parth quite rightly points out, unfortunately, it's just a clinical study that's a voluntary program and it's generally aimed at those that are, let's say, more susceptible or at risk to type one. And that program is for three to 13 year olds. Lila was two. She wouldn't have been eligible for that ELSA study program. Obviously, after Lila's passing, we signed Jack up for the program, and Jack doesn't have any antibodies. But what's also important to know is we think that it's a great, great initiative. We think that the program should go national because if we're finding antibodies in the system, but they're not yet living with site one, it can be put onto data systems with doctors. And when they go. And when they go in to see their doctor, they know that they're at risk.

C (48:44)

Yeah.

B (48:45)

And it also gives families the opportunity, the preparation and planning for when the event will happen, that that child will develop Site one. They're in a better place to deal with it.

C (48:57)

Yeah. John, this morning I actually interviewed a doctor about early detection and screening and, you know, trying to draw more attention to it. It's a difficult path to get people to be aware of and even to get doctors to agree to. If you were to come to them and say, hey, I need to be screened for something for them to say, yeah, that makes sense, let's do that. You know, there's a lot of education that needs to happen.

B (49:19)

Exactly.

C (49:20)

You said you've met a lot of people who've kids got in your daughter's situation but were maybe saved at the last second by something. But have you heard from other people who've lost their children and is there a way to, I don't know, gang up, you know, get together? Like, is there. You know what I mean? Like. I mean, instead of everybody off in a certain direction, trying to do a thing, what if you guys united, would it make it more powerful? Do you think it would help bring more attention?

B (49:48)

Indeed. I've been speaking to a lady from Wales. She lost her son a few weeks after his 13th birthday. I won't mention her name because I don't think. But what I will say is she is an absolutely wonderful, wonderful woman and she's a fantastic advocate. She's. The work she's done in Wales has been magnificent. She's actually won a Pride of Britain award as well. She knows who she is. And if we've got any Brits listening, everyone will know I'm talking about now. But, but yeah, I've spoke to her. She said that apparently med schools in the uk now, I don't know how true this is, they get around 15 minutes on the subject to type one.

C (50:29)

Yeah, that's about right.

B (50:31)

So when I spoke recently to one of my local MPs, she's going to get me in touch with our local Holyoke med School. She's going to try and get me to stand in lectures and talk about Lila. And if we can put, without due respect, if we can put the fear of God in people whilst they're still in med school, maybe that will make them understand the importance of testing for diabetes. Very, very critical.

C (51:01)

You know, that moment comes up, it occurs to them that this is one of the things they should be wondering about.

B (51:07)

And I'm. I mean, I'm at the moment, I'm doing, trying to raise as many funds as possible for Breakthrough T1D. I've raised 11,000lbs. That's about $15,000 in just over two months since Lila's passing. We did a family fun day and it was, it was, it was absolutely packed. Incredibly proud. I've been sending emails out to all the GP surgeries in the United Kingdom. That's going to be a long and arduous process. But I'm currently at just over 4,000 emails sent. But that's across GP surgeries, primary care networks, integrated care boards, diabetes specialist, nurse nurses, and of them, 4,000 emails. I've received 42 responses so far.

C (51:51)

Okay.

B (51:52)

But of them 42 responses, they have all been positive. You know, because I've been saying in this email, do you have blood glucose monitoring kits? Do you have dip tests for urine, food ketones? And are you displaying four teeth posters within your surgery? And when those that have been emailing me backs in, we didn't have them posters, but now we're putting them up in the reception area or we're putting them in our digital boards and all sorts of. If Lila's legacy can save just one.

C (52:20)

Life, I'm sure it will, Jon.

B (52:23)

She's doing all right. I mean, to be honest with you, I was very. I was running on fumes for quite a while, but Lila is giving me the strength to keep going. Every time I feel like I'm gonna lose it, you know, when I'm speaking to somebody of importance, I can feel her touching my hand and saying, come on, daddy, you can get through this. So I know she's with us. Even though she's, even though she's not here in body, I know she's with us in spirit. And I mean.

C (52:53)

And you can still fight for her.

B (52:55)

Indeed, indeed. You know, and she's. Yeah, let's leave a lasting legacy for. Right. You know, it's. And I'm doing so doing something stupid in the next couple of weeks as well. I'm gonna be basically. I've been a keyboard warrior for the last three or four months, emailing every man and the dog. But consequently, I put about a few stone on in weight or kilo, kilos or pounds, whatever you want to call it.

C (53:22)

Need to get out and get moving a little bit.

B (53:25)

Yeah. Yeah. So I'm gonna do a 10 mile walk in Hull. We're. We're mad about our rugby league. So I'm gonna walk from the. The stadium of the club that I support, all fc to the right rivals, whole Kingston Rovers. So I'm walking from the west of the city to the east of the city and back again and that's about 10 miles. So I need to get. Because walking is one of my passions, but I haven't been doing much of it lately. But I need to, I need to shift some timber.

A (53:53)

Well, I just looked while you were.

C (53:55)

Talking and today the. This podcast is ranked number 48 in the UK for med in the medicine category. So hopefully people will hear it and share it with maybe their physicians offices, you know, people they know anyway, at all to help get your message around and make sure that people, you know, remember the four t's and remember that, you know, this could. Just because it doesn't happen to everybody doesn't mean it can't happen to somebody. And it's worth knowing about and fighting for and making sure that people are aware. I'm so sorry. I have to admit that it took me a while to pull myself back together when you told me about how you open her bedroom door in the morning and say good morning. And I wasn't okay. After that. I don't know how you were still talking, because I was trying to compose myself quietly off the microphone.

B (54:44)

Yeah.

C (54:45)

And I found a post online from July about your petition. I guess you had a petition going around. Maybe you still do. I'm not sure.

B (54:54)

Yeah, it runs till December. It's currently at 21,250. We need to get to 100.

C (55:00)

And those people need to be imagining, like citizens of the UK can't be just from anywhere, right?

B (55:05)

Yeah. As long as you're a UK citizen, you've got a UK passport, you can sign the petition. The trouble is with petitions is generally at 10,000 signatures, the UK government responds online and it's usually no matter what the petition is, they generally fob it off. They currently believe that there's insufficient evidence supporting routine testing for pediatric T1D and it has no plans to introduce it. Well, let me tell you this, UK government, and I hope you're listening, one in 250 children are diagnosed with it. One in 100 across all age groups in the UK. So nearly 40%, 100,000 are diagnosed at DKA stage. And our daughter is buried in a cemetery among adults because she's too. She was too tall to be put in a baby part. So, you know. Yeah, we need to get to 100,000 to get it debated properly in Parliament. Now, I know you can get things legislated without the need for a petition, but we. But to get 100,000 signatures across the line would really, really drive the issue further. There's been a. I don't know if you know, Scott, but there's been a bit of a scandal in the UK as well lately. 55,000 people recently have been misdiagnosed with type 2 diabetes. They've actually been misdiagnosed with the condition because the test. Because the testing systems were incorrect.

C (56:30)

Oh, my gosh. I didn't know about that.

B (56:32)

That's just recently hit the national news.

A (56:34)

I was going to tell you that.

C (56:35)

I think it's very impressive that 21,000 people signed this petition is no small feat to get that many People to look at something and take a moment to, to complete it like this.

B (56:45)

It is, it is. But then you get somebody like coming online every now and again saying, call an immediate general election and next thing you know, you've got 3 million signatures within five minutes and you're like, come on, they're not gonna call it, are they? You know, at least if you're going to put a petition on, make it meaningful. We are on page one of the petitions, which is, which is a feat in itself. It's like going back to when I was been speaking with the T1D community. I just don't think their voices are heard. I don't think they understand what living with a condition means. That misconception of should you be eating that cream cake? You know, all that kind of thing. You know, you can't eat sugar, you know, well, what am I supposed to eat? Tires. Tires, yeah.

C (57:30)

Hard to make it for people to really understand something like this that they don't live with already. And it's so much time and effort to get somebody to be educated. That's why I said, I think it's fascinating and marvelous that you got 21,000. I can't believe somebody won't look at it for 21,000 signatures. 100,000, an insane number for something like this, you know, for. I mean, type 1 diabetes is obviously impacts a lot of people, but it's still a very small fraction of the, the number of people walking the planet.

B (57:59)

Yeah, yeah, yeah.

C (58:00)

21,000 is pretty like, you know, you said you're on a pretty small island, you know, I mean, how many people in the UK even have type 1?

B (58:07)

The last estimated 400,000. We've got the fourth highest rate of type 1 diabetes in Europe and the UK government think that we haven't got a problem here.

C (58:17)

Yeah, but 400. My, my point is, is that like 21,000 is what percent. 400,000. It's a big number.

B (58:27)

Yeah.

C (58:28)

I mean, you're representing 400,000 people. If that's the number, 21,000 is a big chunk of them. It's over 5% of the people of type one. To say that you need 100,000 signatures, one in every four people with type one would need to sign your petition. How the hell are you supposed to even meet those people, let alone.

B (58:48)

Exactly. But what you need to remember, Scott as well is it's. It's kind of like it's, it's not about just people would Type one sign and everybody in the UK should be signing this.

C (58:57)

Yeah. They don't know.

B (58:58)

In my opinion, you have a.

C (59:00)

You have a level of perspective that most people don't have.

B (59:03)

Yeah, well. Well, I say that. I say that from a bias perspective and an emotional perspective. But the, the reason to say that, like, even if you haven't got tight one, sign it. Because people regard it as a rare condition. Yeah. But it's only rare until it happens to you.

C (59:18)

You know, that's for certain.

B (59:19)

Type 1 diabetes does not discriminate. It doesn't care if you're black, white, pink, yellow, or brown. It doesn't matter if you're 1 years old. It doesn't matter if you're 100 years old. If it wants you, it'll get you. And going back to the antibody testing thing as well, you can go through life without any antibodies whatsoever, but you just get one virus that attacks your pancreas and all of a sudden you've got it. There's various ways in which you can get type one, and I think it's critical for people to realize that it's not an I'm all right Jack thing.

C (59:50)

Yeah.

B (59:51)

At the end of the day, this, this, this petition, it's not just for me personally and our family personally. It's very much centered around the loss of our beautiful two year old little girl.

C (60:01)

Yeah.

B (60:02)

But it's also to advocate for change and make sure that no child ever goes through what Lila's been through again. And the sooner people realize that, the sooner they'll start signing this petition.

C (60:14)

I hope so. John, let me ask you a couple of other questions. I imagine looking down, you have a good feeling for your lineage and your wife. So are there other autoimmune issues in the family? Are we talking about celiac or hypothyroidism? Do people have, you know, any other autoimmune issues that you know of in the family?

A (60:34)

Ra.

C (60:34)

For example, Right.

B (60:36)

Within our family. Emma's got lupus.

C (60:40)

Okay.

B (60:41)

But lupus doesn't guarantee. So basically, when. When Lila was born, she was tested for lupus, came back negative. I was born with cerebral palsy.

C (60:52)

Okay.

B (60:52)

Or cerebral palsy. But again, you can't get cerebral palsy by proxy. That's caused by a lack of oxygen to the brain.

C (60:58)

Right.

B (60:59)

I was born with placenta previa. People used to think, I used to say, when you score on dates with women, I said, look, I've got something to reveal to you. I've got cerebral palsy, which affects my right arm and my right leg. But don't worry, if I kiss you, you won't Capture at least.

C (61:16)

No, please. I mean, but what about like, Crohn's colitis?

B (61:20)

Nope.

C (61:20)

Anemia.

B (61:21)

What?

C (61:22)

I'm trying to think Addison's graves like anything like that, like aunts, uncles, farther apart, like down the line.

B (61:29)

Nope.

C (61:30)

No.

B (61:30)

So Lila was brand new.

C (61:33)

You'll never know because she wasn't screened. Right. But if maybe she had antibodies and then like you said, the virus came and. Listen, my daughter had a virus right before her diagnosis as well.

B (61:44)

Yeah.

C (61:44)

And I mean, it's fairly, I think, commonly understood that this can be the pathway. You have some sort of a virus, your immune system, you know, gets a little half cocked and ends up, you know, attacking beta cells instead of the virus. Vice versa. Yeah, like that kind of problem, you know, it's not uncommon, obviously. It's also not a thing you would have known. We would. We didn't know. To think that people are going to be screened at birth for that stuff is, you know, if they. If anybody gets that accomplished. We're not. We're nowhere near that yet. That's. You're a decade away of people maybe even making inroads and they're getting somebody to consider type one something that we'd screen for those auto antibodies.

B (62:23)

Well, you're right. You're right, Scott, you're right. What doctors need to be thinking as well is regardless of whether somebody's got antibodies or not, if your child at such a tender age goes in with any sort of virus, like your tonsillitis, the doctor needs to be thinking, what's the root cause?

C (62:41)

And maybe that should escalate their thinking, right? Like, hey, you've experienced the virus. Maybe that makes you more susceptible now to a diagnosis of something else. What are those things we could be looking for? Type 1 being one of them.

B (62:54)

Exactly. Exactly.

C (62:56)

Boy, John, I want to wish you a ton of success at getting that into people's consciousness. And I hope this is helping you do that. You know, if you'd like to send me over any kind of post that would point to literature you have online, to the petition to all those things, you know, I'd be happy to put it up for you online as well. Do you have a website that we could direct people to?

B (63:19)

No, I don't have a website, but what I will do.

C (63:22)

Facebook page.

B (63:23)

Yeah, I've got a Facebook page. What I'll do is I'll send you an email, Scott. Within my signature it says follow me on my socials and it has my Facebook, my Tick tock, Twitter, tweet, X X, whatever you want. To call it now. So you'll be able to find me through there? Yeah, I'll send you an email and immediately after the podcast.

C (63:42)

Yeah. And I'll put it all out there for you and hopefully it'll, it'll reach people that can be helpful. I mean, I want to say again, I know we don't know each other, but I certainly hope that you and your family can find a way to, I mean, find some sort of peaceful moments here and again and to build forward for the three of you. I can't imagine, honestly what you're going through. I don't know how to. I don't even know how to be comforting, honestly. I don't even know if I could be. But I hope you guys find a way to find some peace and some quiet. And I don't know what that is. I'd love to be able to give you advice, but I don't know what it is. But I hope you keep looking for it and that you and your wife can find it for you guys and for Jack.

B (64:29)

Thank you, Scott. We really appreciate that. And love to you and your family. Love to America, Love to the UK and thanks for having me.

C (64:40)

No, it's my pleasure. If you have any updates ever, please, please don't hesitate to reach out.

B (64:45)

Yeah, brilliant. Remember the hashtag Lila's Law.

C (64:49)

Okay. Yeah. Thank you, everybody. John, hold on one second for me. You're going to stop, but I'm going to keep talking to you for a second, okay?

B (64:55)

Okay.

C (64:55)

All right. Thank you.

A (65:06)

Having an easy to use and accurate blood glucose meter is just one click away. Contour next.com juicebox that's right. Today's episode is sponsored by the Contour Next Gen blood glucose meter. Thanks for tuning in today and thanks to Medtronic Diabetes for sponsoring this episode. We've been talking about Medtronic's MiniMed 780G system today. An automated insulin delivery system that helps make diabetes management easier day and night. Whether it's their meal detection technology or where the Medtronic extended infusion set, it all comes together to simplify life with diabetes. Go find out more at my link medtronicdiabetes.com juicebox.