Become a Creator today!Start creating today - Share your story with the world!
Start for free
00:00:00
00:00:01
Episode 19: A Mother’s Story: Henry’s Type 1 & Coeliac Journey
67 Plays1 day ago
In this deeply personal and raw episode of the Type 1 Club Podcast, Jacqui Kidman sits down with her now close friend Sally Jeffree, who bravely shares the story of her son Henry’s type 1 diabetes diagnosis—and everything that came with it.
It all began with an unexplained fainting episode at a birthday party. What followed was a whirlwind: a type 1 diabetes diagnosis while Sally was caring for a newborn, and then, within 12 months, a coeliac disease diagnosis too.
Sally opens up about:
- The moment everything changed
- Navigating hospital stays and newborn care at the same time
- The crushing weight of grief, guilt, and helplessness
- The unexpected strength that comes from friendship, community, and being seen
This is an honest conversation between two mothers who understand the impact of a chronic diagnosis—not just on a child, but on a whole family. Sally’s story is raw, real, and ultimately full of connection.
🎧 Listen now and share with someone who needs to hear they’re not alone.
#Type1Diabetes #DiagnosisStory #T1D #CeliacDisease #Motherhood #ChronicIllness #Type1ClubPodcast #RealTalk #ParentingWithPurpose
Further Resources:
Type 1 Foundation Website
Follow us on Instagram
Join the Facebook Group
Recommended
Transcript
Introduction and Disclaimer
00:00:00
Speaker
The content provided in this podcast is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
00:00:14
Speaker
Reliance on any information provided by this podcast is solely at your own risk.
Jackie's Story and Guest Introduction
00:00:23
Speaker
Welcome to the Type 1 Club. Whether you're a parent grappling with a new diagnosis, a caregiver seeking guidance, or simply someone wanting to learn more about type 1 diabetes, this podcast is for you.
00:00:36
Speaker
Together, let's dispel myths, break down barriers and build a community of understanding and resilience. Join us as we embark on this journey together, because with knowledge, compassion and support, no one should ever feel alone in managing type 1 diabetes.
00:00:54
Speaker
Welcome to the Type 1 Club. Hey everybody, welcome back to the Type 1 Club. I am your host, Jackie. i am a mum of Harvey, who is nine years old, or he'll say now nine and a half, and he was diagnosed in June 2022.
00:01:14
Speaker
Today on the podcast, I have a friend, actually, little chance meeting that Sally and I had ah few years ago, and we'll tell you that story soon. But I have Sally who is going to share hey and her son Henry's diagnosis story.
00:01:31
Speaker
Henry was diagnosed about 12 months after Harvey. So Sally's going to go through that story and share everything. But um first of all, I'd just like to welcome you, Sally. Thank you so much for being on the podcast.
00:01:44
Speaker
Thanks, Jackie. So... Sally's actually my neighbour.
Cultural Differences in Diabetes Terminology
00:01:49
Speaker
Well, five doors up if you count the houses in between. this And I met Sally one morning walking down to the coffee shop because I guess that's where us Type 1 mums like to hang out a bit. They cry.
00:02:06
Speaker
Well, funnily enough, I was listening to a podcast about Type 1 and it was American-based podcast and I thought, oh, gosh, I don't understand half this stuff.
Local Community and Support
00:02:16
Speaker
I don't know if anyone else feels that way with the lingo between America or other parts of the of the world and um and how they talk about certain medications or even just the the numbers, you know, when they say 300 and something and you're like, what does that actually mean?
00:02:32
Speaker
I'm sure there's some graph I could look up to in comparison. I think I have before. um and i was And I was actually thinking, oh, it's quite frustrating. i would like to hear more of an Australian one. Anyway, maybe that's what sparked starting this podcast. But...
00:02:44
Speaker
Around the corner, this guy came with his dog and he was wearing a type 1 foundation beanie. And I was like, oh, that's weird. I'm listening to this podcast. There's a guy with the type 1 foundation beanie. and um And then I said to him, oh, ah you know, I noticed your beanie. Have you got connections in that and with any type 1 diabetics?
Henry's Diagnosis Journey
00:03:04
Speaker
Thinking that maybe he was type 1. And he said, oh, no, no, it's just a mate from footy. He got diagnosed when he was about in his thirty s And he just started selling these beanies.
00:03:14
Speaker
And then we were chatting a little bit. I think I shared my story a little bit. And then Sally came up and then heard me say, oversharing and then turned to me and said, turned to both both and said, oh, my son was just diagnosed with with type 1.
00:03:31
Speaker
Well, actually, Jackie, I think Henry was there and remember he piped up and said, I have type 1 diabetes. Oh, I don't remember that. Oh, my God. Yeah, and then we all looked at him and we were like, oh, my goodness.
00:03:41
Speaker
And then I looked at Sally and we hung each other and then we cried. Absolutely. Henry had just been diagnosed so it was kind of, you know, and you feel a bit alone in that that moment. Oh, totally. And I knew, and and I think someone had said to me, like in the community, had said, oh, there's and there's another boy that's recently been no-nosed, but not actually connecting, that we were just like literally up the road from each other. the same street. On the same, which is wild, isn't it? um And I didn't kind of connect that until that point. I remember just when you said, you know, that he was just, he's just been diagnosed. So we must have been like, what, about a couple of months in or something. Yeah, yeah not even, I don't think. Yeah, and then i just I just grabbed Sally and just hugged her because I knew exactly what she was going through those first months.
00:04:26
Speaker
We're going to try and keep ourselves together, aren't we, for this one? I just knew that exactly what you were going through though for those yeah first few months and the isolation of how you think, well, it's often often it's middle of the night, it's long nights, you are a alone. you know Even though we have this community around us now,
00:04:47
Speaker
There's not that many people that you can message in the middle of the night, is there? You know, like even, I mean, we haven't kind of gone that far with each other, but we've certainly done the early morning. Oh, absolutely. I've had a terrible night, you know, but of even us this morning, we just did the same thing. We're like, how was your night? Yeah. And it was even, you know, our boys go to the same school now.
00:05:04
Speaker
But Henry was just in kindy then and so really he had no one around that had type 1. yeah So it was so lovely. You know, our boys then now go to school together and it's just, yeah, it's really nice.
00:05:16
Speaker
yeah Yeah, it is. And for Henry as well, I think, because he was absolutely he wanted to know someone else that had, yeah.
Hospital Experience and Immediate Challenges
00:05:23
Speaker
um So that's how that's that's how how we met. What a little new thing we had, hey? Yeah. and And we've been friends ever since, of course. Right. um And we've we we We've done the sort of random calls of do you have do you have a spare CGM? Do you have, like, you know, we've had to do that a few times.
00:05:41
Speaker
and um And, yeah, our boys have caught up quite a lot as well, which is really nice. So Sally, I wanted you to share that bit about our story. What about, would you mind starting sharing Henry's diagnosis story?
00:05:57
Speaker
So it is a bit traumatic and I will try not to cry. i'm very tired this morning. And looking at your face, I know we just look at each other and we have a moment. Yeah, I have pushed a bit away, yeah,
00:06:12
Speaker
Yeah, of course I will retell it. um So i was actually two weeks out, just to give bit of context, um from giving birth to my second child. And we're at a birthday party and Henry just came up to me.
00:06:26
Speaker
and of course he was there devouring the you know, the honey joys, as he did before he was diagnosed. And um he just came up to me and just said, I just feel really hot, Mama.
00:06:40
Speaker
And then he just passed out my arms and went unconscious. Of course, I freak out in an emergency with my children. So thank goodness Marco was there, my husband.
00:06:51
Speaker
And he took over and he knew we had to do little bit of CPR, unfortunately. um Ambulance was called, they came straight away. um And I'm so grateful that
Balancing Care and New Diagnoses
00:07:01
Speaker
he woke up by himself and it was okay.
00:07:04
Speaker
That was the first, you know, real, quite the start of his journey, I feel. He then got obviously got rushed to hospital. Oh, sorry, before that, they tried to finger prick him.
00:07:17
Speaker
You know, of course, if you pass out, you know, they're thinking low blood sugar levels. But then the paramedic said, well, he's just had a lot of sugar. um So it doesn't matter if he doesn't finger prick. And Henry was refusing anyway.
00:07:30
Speaker
So they kind of just bypassed that. Anyway, so we were rushed to hospital and then he rebounded very quickly. And they said, oh, okay, maybe it is just epilepsy. Could be his first epilepsy.
00:07:42
Speaker
And then we were released. And so obviously I was on edge trying to look out for, you know, any more seizures or... No more honey joys. No more honey joys. Thank you. And I just didn't even think about diabetes at that stage. We've got a strong family history.
00:07:57
Speaker
But we obviously, I don't know if it was a virus that could have triggered that off or I don't know. But then it was, it gets more traumatic unfortunately.
00:08:08
Speaker
So a couple of days later, He woke up in the morning with just severe headache and he could not look at the light and was just in fetal position. And obviously I rushed him to hospital straight away um and then continued to have these kind of headaches and seizures.
00:08:25
Speaker
And so we were in hospital for a good week there. um They did CT scans, they did everything, they did the virus checks. they They couldn't put their finger on it and they believed it wasn't a virus because he was so up and down and I don't believe there was any check for diabetes done.
00:08:45
Speaker
So then we went home and ever since these episodes, he's never been my Henry. So it was good. Sorry. um Yeah, because you've never shared this long story with me either. No, I have full story of reading that.
00:09:00
Speaker
hard to relive it, isn't it? Yeah. It's hard to push it down. you come out of hospital from these headaches, these, and then how old is Henry at this time? Henry was five. Okay.
00:09:16
Speaker
um No, sorry, he wasn't even five then. um No, he was almost five. And so we come out of hospital. He's just not the same kid. He is pale.
00:09:27
Speaker
He's dizzy often. he And I just, you know, his behaviour was off. This is not my child. And obviously I had, I kept going back to the GP and saying, you know, he's just still not right.
00:09:41
Speaker
I would love just more tests. And they just said, oh, you know, we'll just keep it on. It could have been, you know, this and that, um could have been a virus that he's still recovering from. And I was just like, okay.
00:09:52
Speaker
Anyway, fast forward eight months later, obviously I'd had my second child. Things were just a bit rough. You know, Henry's behaviour was just very off. He was tired.
00:10:03
Speaker
He was pale. And then, you know, of course then came the major signs, the wetting of the bed, the urinating frequently, the drinking. And I went, oh, no, okay.
00:10:14
Speaker
You know, I've got diabetes in my family. I went, okay, let's just go get this checked out. And, of course, similar story then to Harvey's, we got straight into hospital and,
Community Support and Ongoing Challenges
00:10:26
Speaker
um yes, that was eight months later.
00:10:29
Speaker
So went back to the GP. Back to the GP. And said these are now the symptoms. And they did the urine test. Then we got sent to hospital. Yeah. So Marco goes off to, um Dad goes off to to hospital with him. And he's obviously got a newborn baby.
00:10:47
Speaker
So Anna's what? Almost eight months old. Almost eight months old. Yeah. yeah Wow. That's a lot. tom When you were in the hospital, did you go in to do the training? did. How did you manage that? did.
00:11:00
Speaker
So we don't have any family around either, so i had to take Anna in. um I was there for as much as I could, but I still have a lot of, you know, guilt of not being there. I feel like enough as much as wanted to be.
00:11:14
Speaker
Oh, that's so hard to divide your time, I think, anyway. Oh, gosh. I know. I told you. Jackie, every time we... This is us every time we catch up, guys, so don't worry. um I think you get that, I think at that time when you've got a ah newborn baby, you've got it a an older child, i think that you always feel that there's not enough time anyway. So regardless of whether there was this diagnosis,
00:11:40
Speaker
there is still moments where Henry was probably at kinder and there was things that you might you you might have missed or not being able to to be at that you would have still felt that guilt of, you know, that's just what I feel like we get this constant mother's guilt around those sort of things anyway.
00:11:59
Speaker
Then you add this extra layer of the fact that you know that he's in hospital, you're at home trying to just be quite normal, I'm sort of saying in brackets, for Anna and for you because you're, you know, if your body is raging with hormones and but yet you're also getting, you know, that that worry I can imagine of this worry of what's happening at the hospital with my child, this worry of I have this newborn baby to also care Yes.
00:12:27
Speaker
How do you be two people? At once, i you know, in two places at once. he just it's just It's just not possible. But it doesn't iit doesn't diminish the the guilt that I can imagine there is.
00:12:37
Speaker
know that's right. That's what you always have. But he wasn't in hospital on his own. He had his dad, Marco, there um and you were there when you could be. So you just had to divide time between o like And then Marco relaying of what you've got to do and that sort of stuff. Yeah. yeah So we managed. for
Family Resilience and Pride
00:12:58
Speaker
yeah what was the What was the date that he was diagnosed?
00:13:00
Speaker
It was the 13th of May, 2023. two thousand and twenty three so yeah So almost a year after Almost a year, exactly, yeah yeah. So like Harvey, it was just after their birthday.
00:13:13
Speaker
It's very similar. Yeah, crazy, isn't it? It's crazy. But a couple of years, Henry was a couple of years earlier. So have you ever gone back, sometimes it's not worth rehashing things. I feel like in terms of gone back and asked, you know, with that like that first admission into hospital after he collapsed, do they think that that's could have been already signs or was it that something that could have triggered?
00:13:41
Speaker
They didn't really give me answers at the hospital. So with the diagnosis, I was trying to piece things together, you know, and I've seen these signs all along and was just thinking, oh my gosh, you know, what's wrong with my child?
00:13:53
Speaker
I knew, you know, that maternal instinct where you just... this isn't my child, something's going on. ah know for us it was the behaviour as well that was one of the main symptoms. It wasn't our Henry.
00:14:04
Speaker
He's so happy, you know, outgoing and he was just turning very just – we were just having meltdowns, huge meltdowns. Obviously he was extremely tired and just agitated, as he does still sometimes when he gets high, and whereas Harvey didn't have those signs and symptoms.
00:14:22
Speaker
No, no. And he was still little, you know, they're still learning to manage – you know, big emotions as it is, let alone having
Future Hopes with Medical Devices
00:14:29
Speaker
and i think that's huge numbers. Yeah, and I think that's the that's that's the trouble that we have is it's like, oh, but maybe it's just a developmental stage or maybe, you know, they're just, you know, bit more active and that's why they're losing a little bit of weight or, you know, we we always kind of second guess ourselves. he just had a sibling as well, you know, like it's a big thing, thinking, oh, is he jealous, you know, what's going on?
00:14:53
Speaker
Lots of factors. Yeah. Hard, very hard. Wow. And then so he comes out of hospital and then you he's he's going to four-year-old kinder?
00:15:04
Speaker
Four-year-old kinder. And it was actually another amazing coincidence, like our meeting. um So his educator is a type one. So that was a huge help.
00:15:15
Speaker
in making us feel comfortable. And eventually after, know, a couple of months, she was happy to give me these injections. So you were going up there every day. Well, guess shorter days, wasn't It was shorter days. So it was sort of you could sort of manage. Yeah, that's right.
00:15:28
Speaker
But she would, you know, she just knew how to manage it as well. You know, slip him a few crackers here if he's starting to dip or, you know. um It was just made me feel lot more comfortable.
00:15:39
Speaker
And it was obviously he was doing bush kindy as well, so very active. Yeah, so it was just great. I'm still in touch with her now. Oh, that's nice. I'm only her daughter's now type one. Oh, wow. So, yeah, we just, we chat all the time, which is lovely.
00:15:53
Speaker
Wow, that's nice. Look at these connections. This is you. You didn't have anyone when Henry was diagnosed. And now look at you. You've got yeah all these connections. And, yeah, look at, you know, like it's quite amazing how you didn't think initially you felt so alone. And I know that we still do.
00:16:10
Speaker
those those nights we still do feel very alone or those moments you think, I'm the only one that's going through this. But I think now i guess you know that you're not. Like it's comforting to know that you can just, there's people that you can contact. and Yeah, absolutely.
00:16:24
Speaker
Yeah.
00:16:27
Speaker
Don't ignore the four. The four early warning signs of type 1 diabetes, excessive thirst, frequent urination, unexplained weight loss and extreme fatigue.
00:16:37
Speaker
If you or someone you know is experiencing these symptoms, don't wait. Get checked by a healthcare professional. Early detection and treatment are key to managing type 1 diabetes effectively.
00:16:51
Speaker
So when Henry went to kinder, was he on a CGM? Yes. So he left hospital with one. Yeah, I know. Fast forward year after Harvey was diagnosed. Yeah, whereas we had four months without well That's right. Which was not a bad thing, but it was it was, and I've said it before on this podcast, is that when I did get that information from a CGM, it was it overwhelmed me because had too much information.
00:17:18
Speaker
this and i get that. Yeah, versus when you had the finger pricks every, you know, three, four hours. I had
Conclusion and Listener Appreciation
00:17:25
Speaker
just that, you know. I just had those, you know, what, what six readings or something a day versus constant five-minute readings. Although this was the first Libre that he left with, so it was the the ones where you had to touch.
00:17:40
Speaker
um So I still didn't see his levels, I don't believe. I can't remember how it worked. It only worked to his phone. Yes, and I do remember when you came over here one day and the tap. Yes.
00:17:51
Speaker
Yeah, did you were like, oh, let me just check his levels. Yeah. Yeah, that's right. had to tap him. Yeah, but now you're not on the Libre. Dexcom. And Libre's changed though now, isn't it? It's more the five-minute readings like Dexcom. Yeah. Okay.
00:18:02
Speaker
And you are still doing manual. Yeah, like you. And DI. Yeah. Yeah. And we're hopefully on the Omnipod soon, which we're hoping. Yes. Yeah. Okay.
00:18:13
Speaker
Do you feel like sharing the next part of Henry's story? Sure. Because this is still another roar. No, sure. I feel like it would help a lot of people and maybe. i think it will as well. um So, again, fast forward almost another year, coming up close to his one-year diagnosis, we noticed a few more signs and symptoms.
00:18:34
Speaker
Dizzy again, pale, low in iron, which wasn't a big shock, the iron, because he is a vegetarian, by choice. Of course, that's right. I forgot about it, yes. which makes his diet even harder. But anyway, um and i knew just automatically I was tested for celiac When I was younger, due to my inability to absorb iron, I was not celiac. However, Henry was tested for it because I pushed forward his yearly bloods for celiac and whatnot.
00:19:08
Speaker
And yeah he did come back with high numbers. So then they went forward and did further testing, just to confirm. Again, high numbers, antibodies.
00:19:21
Speaker
And then we... finally got the results. It took quite a while. Obviously, they can now um diagnose celiac just from the bloods and we did feel comfortable doing that.
00:19:32
Speaker
However, we also wanted to go ahead with um the scope just to really check and to make sure because going forward, we didn't want to put him on a gluten-free diet if there, you know, by chance, some chance.
00:19:46
Speaker
but Yeah. So while we're on the gluten, we went ahead and we had the scope done and, of course, they came back with positive results. It was six weeks of him eating gluten. Yeah, and it was like he would say, feeding him poison.
00:20:01
Speaker
um because he was really pushing it away at that stage. He did not. He knew it made him feel sick and it was just awful, awful.
00:20:12
Speaker
And one of the big signs actually, which I forgot to mention, his levels. So he was just dropping. This is when he was on gluten and we didn't know he was celiac. I was. particularly in the last month or so, um he was on the minimal insulin.
00:20:28
Speaker
So the food we were giving him, you know, usually he was a bread roll, you know, one carb, one unit, sorry. um We would have to give him like 0.5 or less, not even, and he would possibly hypo. So it obviously wasn't being absorbed, all these nutrients and the carbs were,
00:20:48
Speaker
So giving him insulin with that, it was just causing him type oil all the time. So he was on minimal units of insulin at the time and so we knew something was that.
00:21:00
Speaker
Wow. So I did a little look into um just for people to around awareness around type 1 and celiac disease. So I guess there's approximately 134 hundred and thirty four thousand individuals living with type 1 in Australia and it's estimated that five to ten percent of those individuals also have celiac disease so it's quite any so that's it's roughly you know aren't just under between six six and a half thousand to thirteen and a half thousand people who were type 1s also living with celiac disease yeah and in the around the time that our kids were
00:21:41
Speaker
diagnosed in those sort of that 20 22 23 there was an average of about 3 000 people being diagnosed per year wow i think it's a little bit more now to be honest with you but the 2021 stats were 3 000 new diagnoses so so when you put that into perspective that's around 150 300 diagnosed children people new diagnosed children people also having been diagnosed with celiac or already having celiac disease.
00:22:13
Speaker
It's crazy, isn't it? That is crazy. Yeah, and Henry is one of them. Henry is one of them.
00:22:22
Speaker
So ah guess that sort of highlights that autoimmune, you know, the overlap that we have with that sort of stuff like thyroid, celiac disease. Type 1 has that connection. And before, you know, obviously Type 1 was strong in our family, but I never knew it was autoimmune. like I don't know, so naive of me. I mean, I just didn't obviously research about it enough until you're in it.
00:22:47
Speaker
don't think it's a naive. I don't think you're naive. i think that as we we have to we have to learn so much and why would you need to learn about this if you didn't have to, to be honest, because it does take – You know, it takes up so much brain space and we're still, we are still know so very little. Like we just know about our own child's management.
00:23:11
Speaker
And even then we're, you know, sometimes we feel like we're doing a bit of experimental stuff with that, you know, let alone understand the whole, you know, yeah we can't even, there's also, you know, you've mentioned it so many times of all this unknown, unknown, unknown. I don't know why he was having those headaches. I don't, they don't know why he had that, you know, sort of seizure, you know,
00:23:32
Speaker
That might have nothing to do with type 1. That's right. Or it could have been a virus triggering it off, the gene. You know, I don't know. I go back and I, you know, try and get my head around it and I and i don't. And maybe i won't ever have answers.
00:23:45
Speaker
but i but And I will never have answers for Harvey either. There was never a moment that I remember him being very unwell or there was never. We had no... You know, had nothing. It was, you know, I think there was one dental visit that I think maybe that's what it was. You know, it's such a guessing game, isn't it? It really is. Because we just never actually know. Yeah. And I think that's the same as what the endocrinologist will say is that it could be, you know, could have been anything within that two years of post-diagnosis that something could have happened and triggered it.
00:24:21
Speaker
you know, we will never know. but that's okay. Like we have to accept that. So then this adds another layer then of you, it I find with, with our type ones and I, and I read, I'm not the only one. I read a lot about um people commenting on forums and stuff. Do we still say forums? It's like a Facebook page. i don't know if we, that's, know you know what I mean? I know what you mean. And, you know, them talking about like, you know, how we, you know, food is weighed, we're checking carbs, we're doing this.
00:24:53
Speaker
And then the, And that constant thing around food that then we get this concern of eating disorders or having, you know, I know that sometimes Harvey will be like, I'm not going to eat at all because he's too worried about going low or going high or, you know, it doesn't happen that often. But the way that I feel like the way that we talk about food, I feel like that's an immense responsibility for us as well now. So I can imagine you then now having to change his diet yeah completely.
00:25:23
Speaker
In fact, money is a vegetarian, which is fine and beautiful and, but i not you know, you know, to try and beat them up with some protein. Absolutely, with protein. it's It's a toughie.
00:25:34
Speaker
And with, I guess, gluten-free foods being higher carb and, you know, not knowing how they're going to act or... you know, react with these levels and how they're going to go. and So it was a big learning curve all over again. It was like starting from scratch, knowing how these different foods will work for him.
00:25:51
Speaker
But I'm so grateful that they have worked for us. He obviously needed a gluten-free diet. It's actually been a whole lot better. Obviously, he feels better. His levels are great or better.
00:26:03
Speaker
But it was just also finding what he likes to eat. Which is hard for five, six-year-old anyway, isn't it? Yeah. um So obviously we just avoid gluten-free bread until we find we've found a few goodies. um But I'm um very lucky. He's just – he's so strong and just so adaptable, I guess the word is.
00:26:25
Speaker
I asked him, Henry, would you like, you know, us to go on a gluten-free diet as well, thinking, you know, it would be easier for everybody and easier for him, of course. He said, no no, no, no, I don't even want it anyway.
00:26:36
Speaker
Like – and It's just I guess or tummy. I don't want it. So, you know, seeing his two-year-old sister. um I did that croissant down the bakery. I see Anna ate down there. We hid there where Henry's at school. But he doesn't even mind, you know, and I didn't want to put her on a gluten-free diet if we didn't need to.
00:26:57
Speaker
have to take a loan out. So kudos to him. He's just a legend. The only thing that is difficult is parties or, you know, we go out. you know, even down at footy wants some chips.
00:27:08
Speaker
have to check whether they're cooked in the same fryer as nuggets or whatnot. Um, it's just, it's difficult and I have to bring separate food along to parties now, which makes him look different. And I never wanted that, you know, I just, I know there's other kids out there with, you know, allergies and they do it all the time. i just didn't want my type one kid to, you know, tiling they feel different enough, but you know, we go to a party and Harvey could eat everything. You just dose him for it.
00:27:36
Speaker
Yeah. Don't you? You know, so they can eat and kind of be, like the others, but now I guess he feels a bit different, which is tough for me. It's more than him, I guess, but just to see that, you know, yes your child has to be different.
00:27:54
Speaker
Yeah. Yeah. I totally resonate with that because even though Harvey's not like celiac, you still don't want them to be that kid that's like, oh, he's got to have injections or, you know, like, or to be the odd one.
00:28:07
Speaker
That's right. Yeah. And I think I really like, I think to us type one parents really play that up as like, he could do everything. Absolutely. You know, like, yeah, yeah, like include, include, include, you know, like we feel like it's this, you know, please include my child, like I don't want, you know. And I think that we're quite lucky in the sort of types of personalities that our boys have.
00:28:29
Speaker
Very much Is that they are such fun having young kids that they will, and they and they're so resilient, that they will make it work for them. Absolutely. Regardless of what they can and can't eat.
00:28:42
Speaker
I mean, there's sometimes I say to Harvey, no, no, like you can't have three pieces of cake, mate. And that's not even a type one thing. That's just, I would say that before, you know, he was diagnosed. It's just like, no, no, no, you know. Yeah.
00:28:55
Speaker
But. It's, yeah, ah I do recall also those kids that have the dietary requirements in terms of that they can't have that, that there are other ways that parents can include that at parties, but you also don't want to be, you're already kind of feeling like, well, I'm that that's going hang around because. Oh my gosh, that.
00:29:15
Speaker
Yeah, you can't just drop and go. I mean, you will be able to, let me tell you. This will come, but you already feel, you know, when they when they're like that, oh, I can't just do the drop and go because I've got to watch, you know, what he eats and I've got to make sure he doesn't hypo and I don't want to put that responsibility on on another parent.
00:29:32
Speaker
Particularly MDI. Yeah. You know, it's, you know, hanging around just to get their injections. Yeah. So the Omnipod so like or the pump will be, it'll be interesting to see how that changes our lives.
00:29:45
Speaker
Like we were at a party the the other night and Marco was out that night so i had to tag along with Anna in tow, you know, just it it was a pool party so I'm like waiting for his levels to drop and has the pizza arrived yet? When do I give him his injection? So it's a bit before, like just nightmare.
00:30:01
Speaker
Yeah. ah A gluten-free pizza. I bring it along. You bring it along. Bring along the cupcake. Bring along the gluten-free pizza. I know. You're a good mum. You're a good mum.
00:30:14
Speaker
Anyway. So I just wanted to quickly, before we wrap up, just wanted to touch on what's his, now that he's, you know, that he's type 1, he's now getting his insulin requirements.
00:30:26
Speaker
um is obviously off gluten. Behavioural, like those changes. So much better. So much better. I mean, of course, so we had the type 1 diagnosis.
00:30:37
Speaker
Obviously, he was extremely tired and his emotions and obviously dealing with a lot of trauma. So that was a rough patch as well. And then you had the tiredness leaning up to the celiac too. So he was feeling off.
00:30:51
Speaker
He's just back to our Henry. So nice. So we're almost six months on now. um And he's healthy, like he's just growing and he's strong and he's not pale anymore. It's just a relief.
00:31:04
Speaker
Yeah, you're starting to see that well kid again. that well kid again. Yeah. So nice. A couple of years, it's taken a couple of years though. couple years. Yeah.
00:31:15
Speaker
but It'll be two years in May, is that right? And then that eight months, I guess, or more, or that kind of lead up to the diagnosis. So you've really got yourself three years there of an unhealthy child, which is, you know, um I look at him now and I say, oh, it's just beautiful.
00:31:31
Speaker
Yeah. So nice. For him as well, you know, to feel healthy. And it's so good how he must be so aware of his body. Yes. You know, I mean, it was idiot was it's a lot, I think, to put on, you know, a four or five-year-old, six-year-old.
00:31:45
Speaker
But for them just to have that body awareness. Absolutely. And that body autonomy of like, no, no, I know that that's not going to be good for me. It's actually quite quite incredible. I'm very proud of him. Yeah. And he always asks if people offer him food, he'd just say, oh, is it gluten-free?
00:32:02
Speaker
So he's so aware. And even with, you know, foods, like he knows foods that are high sugar and things that he needs insulin for and already the age of six. So, Well, thank you so much for sharing your story with everybody and with me. I know that you had touched on some of those things, but I don't feel like when we first met you were quite ready.
00:32:22
Speaker
No, i really did push that down. So we always like to wrap up. I know that you're listener of the podcast. Do you know my question going to be? No. You don't know what I'm going to say, my finisher.
00:32:32
Speaker
Do you listen to the end? Sorry, Jackie. yeah yeah My... My last question is what's your go-to hypo treatment?
00:32:43
Speaker
That's right. It was your question. I forgot. Of course, we had to change our sweets, so gluten-free jelly beans. Right. Yeah. And do you just get them from a normal chemist or where do you get them from? Particular chemists.
00:32:55
Speaker
Yeah. sorry And Skittles because they're gluten-free. Yeah. yeah I think you told me. Yeah. Which I was stoked about. Do you buy them in the little packs as well so they're a little handy to – travel there's little travel packs yeah well thank you everybody for listening to this week's episode i hope that you and particularly thank you to sally um i hope that you've got some valuable insights from from sally and henry's story and we look forward to bringing you another episode very very soon on the type one club
00:33:31
Speaker
Thank you for tuning in to the Type 1 Club podcast. We hope you've enjoyed today's episode and gained some valuable insights. If you like what you heard, be sure to subscribe to our podcast on all the platforms so you never miss an episode.
00:33:44
Speaker
We also appreciate it if you could leave us a rating and review. It really helps us to reach more listeners just like yourselves. for more updates behind the scenes content and to join the conversation further, follow us on Instagram and Facebook, the Type 1 Foundation, or visit our website, type1foundation.com.au.
00:34:05
Speaker
Thanks again for listening, and we will see you next time on the Type 1 Club.