Episode Transcript
Speaker 1 00:00:09 Hello, and welcome to the wonder Baba podcast. My name is Sheena Mitchell. I'm a pharmacist and mom of three. I'm here to chat all about child and family health. I combine healthcare and practical advice to help you on your parenting journey. I really hope you enjoy the show. If you enjoy listening to a wonder rapid podcast, I'd be really grateful. If you could follow or subscribe and leave a review, it really helps to support the show. Thank you today. I am joined by Chevonne Carol from act for meningitis Shon. Can you tell me a little bit about act for meningitis and your role in it?
Speaker 2 00:00:47 Hi Sheena. So I suppose I started at the beginning and talked you through where the charity began and the reasons behind it. So in April, 2008, I was pregnant with which we, we knew it was gonna be a little boy and Ava who was four and Evan who was two at the time, were at home with their dad. I wasn't feeling well. And I went into the hospital, um, and had really bad headaches and they decided to keep me in for the night to monitor me. So Ava went after her Montessori that day. And I said goodbye to her that morning. And, um, at about eight, nine o'clock that night, I got a phone call from Ava's dad to say Ava was sick and she wasn't feeling well. And that she had given her nor or Cal Paul at the time. And, um, I wasn't really that concerned.
Speaker 1 00:01:39 What, what way was she feeling sick?
Speaker 2 00:01:42 Um, she just, she was complaining of a sore tummy. She was complaining of a sore tummy and a bit of a headache. And, um, I rang her actually at nine o'clock and she told me about all she had learned about in the Nina that day. She learned about Africa and she had a great day at school and she had been to super max with her granny and her little brother, Evan, but, but there was not of concern because kids at that age, you know, especially when they're in, they're in crash and stuff and Montessori, you know, was picking up little bugs and stuff. And she'd been totally fine that morning when I was talking to her, uh, before she went off. And, um, later on that night, no rang to say that she really wasn't getting any better. And it rang the out of our service and said to them that she, she wasn't usually like this when she was sick and that she had been vomiting and she was really restless.
Speaker 2 00:02:35 And they said to him, oh, there's loads of bugs flow around and you, um, just keep an eye her see was a light bothering her, the light wasn't bothering her. And just to check and see if there was any rash. No, there was nothing. And he brought her downstairs and he rang an hour or two later again to say, she's still not right. I'm quite concerned. And they said, just keep an eye on her. Um, so I was asleep in bed in the hospital in Galway and my phone rang and old said a was really, really sick. There's an ambulance on the way. And, um, I couldn't understand. I had, I had talked to her, you know, she had been fine all day. And what had been happening in the house, which I, you know, found out after was that Ava was lying in Null's arms.
Speaker 2 00:03:29 Um, and they were watching Tom and Jerry on the tell and she said, eh, she was watching the watching Patel and he looked down and he thought it was a reflection of the tell on her face. And she just literally kind of started turning gray and she just closed her eyes. And he, my mom had arrived at this stage and, um, he went knocking on doors for help. Um, but it was the middle of the night and people were asleep and, uh, the ambulance arrived. Um, I ran down to the front door of the hospital in Galway and, um, I, I still, I can still picture it and she's, it was 14 years gone now and I can still picture it. It was really, really quiet, which is so strange for, you know, hospital car park. And it was really dark. And I could hear an ambulance in the distance.
Speaker 2 00:04:25 And I remember thinking to myself, God, that ambulance is coming here really quickly. Someone's really, really sick, not for one second, thinking that it could be anything to do with Ava and the ambulance pulled up and I could see Noel sitting in the front seat and the back doors opened and a doctor went, raised him past me and Noel just, um, got out. And he said, it's not good. It's not good won. Um, and they did try, they, they raised past us with Ava and they did try to, um, bring her back, but she was gone and, um, they had us in a room. They had us in a room, um, mind us, cause I was so heavily pregnant. And while they were trying to, to, to bring Ava back and I remember, um, seeing the priest walk towards us in the middle of a and E and the consultant, and they said, I'm really sorry.
Speaker 2 00:05:28 And, uh, they walked us into the room where Ava was. And I still remember that as well. There was, there was complete silence in the room. There must have been about 16, 17, possibly even 20 staff in there between doctors and nurses and a consultant. And they all just stood back and we just walked up and the, she was lying on the bed and she was gone, um, within, I would say like six hours of been sick. We'd lost her to meningitis. Um, and I suppose the only way to describe it is that our lives changed from, from, from that time on, um, four weeks after Noah was born, we knew we were having a boy and Ava had picked the name Noah, and it was so, so difficult at the time because Evan and Sophie shared a room and he slept you at all. But he woke up in the morning, his sister was gone. That was his big sister. He looked up to, she helped him, told him how to walk. She helped him, um, when he was really small. And, uh, that was it. Everything just changed for us on that night. And, um, God, I suppose then we began our lives on a different journey.
Speaker 1 00:06:46 Shahan I like as a mom, as a human, I I'm listening to you here. And while I knew elements, you know, of the story before, I just feel, I feel sick. Like I, I can't start to imagine the horror of all that unfolding. And I know you're used to telling your story and I've shivers now, but you were very heavily pregnant. Mm-hmm
Speaker 1 00:07:23 <affirmative> you had obviously Evan at home in bed as well. So your husband, he went through that evening and in a way I'd want to know which of you, I feel more sorry for, because I know as a mom not to be there is torture and absolutely for him to try and make those decisions and make those calls and to have to look back on that night and to try and to explain it to you, because I'm sure you want to go through every single aspect. And, you know, I just, I, I can't imagine how hard it all was and the way you describe Evan and Ava's relationship. Um, so typical, like I had children the same kind of age apart, and it's so wonderful to see them interact in that way, in a way. It's nice that, you know, Evan knows he had a big sister who played such an important part in his life, and I'm sure he talk about her all the time. And I think like, did I see a little video that he did where Evan said, this is my big sister, Ava, you know? Um, and it's amazing. I I'm speechless. Like, I'm so sorry. It seems stupid, but that's all I can say. Never.
Speaker 2 00:08:55 I know, I know. And you know, um, it's something you don't think is ever gonna happen to you and like the impact and the loss and the, I suppose I call it now the ripple effects the effect of losing Ava on us and our brother and our grandparents and her little friends that she had in the community of, you know, go away the shock. I think that people, the suddenness and the speed of, and I do believe, and I'll still say, literally can take you years to come out of that shock. And even a you saying, I'm, I've shared my story so many times, but still sometimes you sit back and think, did that really happen? Yeah, it was. So it was so horrific that night did that really happened the way I wasn't there. I didn't get to hold her. I didn't get to say goodbye and for no to be there and watch, you know, his little girl like dying in his arms. And, um, it can take a really long time to, to try and come to terms with, you know, the, both of us for our own struggles for, for, for, for those reasons. You know? And, um, I do know that she was looking for me that night. I do know. She said, she said, uh, she said, no, um, where's mammy. And like, I think that was probably one of the hardest things I think, you know, for years that I had to kind of, uh, come to terms with that,
Speaker 1 00:10:29 But, you know, right.
Speaker 2 00:10:30 You know, I wasn't there for her, you know,
Speaker 1 00:10:33 Like, and I, I can, like, I can completely imagine that because the only thing you want to do when your child is unwell, even just with something small is hug them and love them. Yeah. And be there for them.
Speaker 2 00:10:51 Yeah.
Speaker 1 00:10:51 But you, I suppose the most important thing for you to remember is that, and this is the importance of talking today. What Ava had was extremely aggressive extremely quick. And that is the nature of bacterial meningitis. Yeah. And you were literally doing everything you could as a mother to, I suppose, ensure the safety of your unborn child, Noah. Yeah. And you're never going to say, I can't leave one child because I have to mind another, you look after who's ever needs our greatest at that moment. And absolutely as a mother of three myself, I know there's times that you're like, you're torn two, you know? Yeah. You can't be everywhere at once.
Speaker 2 00:11:46 No. And I know, and I know all that and you know, like, you know, I remember the times so many people used to say to us, oh, time is a healer. And you know, you, but like now I, I know all that's true. You know, I know all that, you know, but when you're living in that absolute nightmare, um, and it's just gone round in your head constantly, but like time is a healer. And, you know, the Sophie came along the year after. And, uh, she was the image of Ava. She's Sophie, Ava, and she's the image of her. And, um, the one thing I made the decision about was that my children's lives, weren't going to change because my life changed. And I made that choice very, very soon on. I remember having the conversation with myself that their lives weren't gonna change. So, you know, I did everything I could, you know, possibly for them, for them to have, uh, uh, as much of a normal life as it could from going up to the play, gone to the playgrounds, to doing all the sport, to doing everything, you know, their lives. I did the best I could for them.
Speaker 1 00:13:01 That takes incredible strength. Do you find that in a way, obviously, I'm sure you had some immediate time to grieve cuz you know, at a funeral situation, everyone, everyone steps in, in the early days. Yeah.
Speaker 2 00:13:17 Yeah.
Speaker 1 00:13:18 And they really do. And, but after that you can be in a very dark place. And I can't imagine losing a child, but ultimately like I know even when my own father died suddenly four years ago. Yeah. Um, you know, I'm not, it's not the same thing at all, but I remember I was grieving and you know, the, the kids are adorable in that. They know mommy's sad, you know, dad don't died. Yeah. Yeah. But they're still like, yeah, no I'm hungry. Like yeah. I'm having fights with him. I'm having. And you're like, right. Well I suppose that that's all you're gonna let me have now. And in their own little way, they're so kind and they're so empathetic. Yeah. And there was hugs and love and I could see them looking at me and ultimately your Facebook going, what my choice is now to sit down on the couch and fall solidly and alarm them or to try and park grief for times that you can visit it. Yeah. When you're on your own. And when you have time to actually think about things without being pulled out of true. Yeah. You kinda have to.
Speaker 2 00:14:33 No, because because the day after the funeral I'd get up with everyone and give him his breakfast. Yeah. And four weeks and a day after AEN died, Noah came along and um, I don't remember much about that time. I don't remember. I don't really don't remember the labor. I don't remember much all I do remember. I do remember this part in the labor ward was the midwife myself and Noel and me holding Noah, hugging each other crying. Yeah. In the labor ward. I remember that. And um, then I had to get up and start, do night feeds and you know, um, looking after another baby and the, the nicest thing happened the, the night I went into labor with Sophie, the same midwife was on call walk were the chances she was sent to me. She walked in that door and I remember looking at, and she Shon and she terror and she said, oh, I'm here to mind you.
Speaker 2 00:15:34 And I said, yeah, you are. And I remember saying to her, cause we knew it was a little girl. I remember saying to her, please just mind her for me, just, you know, mind her for me. Um, you know, get her here for me. And um, so like life was so busy. She and I like, and I, I can say now looking back, I never really, really had time to breathe. I, I, I really didn't when I was too busy, I had babies and kids that needed me, you know, that kind of way. And I met her an amazing woman about six or seven weeks after aide. And I was talking to her and I remember her saying to me, I, I know, I understand. And I, I know I, I'd never like really sat back and thought about what a grieving mom or dad would look like.
Speaker 2 00:16:21 You know, I, I hadn't, I didn't have anyone that had lost a child and I didn't know what I visioned a grieving mother for me would look like, but this woman was sitting in front of me and she had lost two children. And I said to her, I said, how, how do you get through it? How, what do you do to get through it? And she said to me, you keep as busy as you can for as long as you can, because she said, it's not in the first few weeks is not in the first year. Maybe even two years that the reality hits you of what's actually happened. And when the reality does finally hit you, she said, you're gonna mean a stronger, better place to be able to deal with it.
Speaker 1 00:17:01 Yeah.
Speaker 2 00:17:02 And I remember thinking, okay, yeah, that's what got her through it. That's what I'm going to do. That's what I'm gonna do. And that's, I suppose, where, you know, the idea came about to set up the charity, to do something, to try and stop another family going through what we went through and
Speaker 1 00:17:22 Amazing positive, you know? And I actually, yeah, look, let's talk about that because it is an amazing charity <laugh>
Speaker 2 00:17:34 So
Speaker 1 00:17:35 How, yeah. How did you go about, um, setting up for meningitis? What were the first steps? How the hell do you start charity? Where does, where
Speaker 2 00:17:44 Does one start? <laugh> um, I, I was a Montessori teacher. I was a Montessori teacher at the time we lost Avon stuff. So I didn't know. So, um, I still have, I have my first diary and I Googled <laugh> how to set up the charity. That was as, as simple as it was Google, how to set up a charity. Um, and the most important thing was the name. So we chose act for meningitis. They act actually stands for the Ava car trust, but act for meningitis. And we want people to act if they suspect meningitis, Ava loved rainbows. And that's where our lovely logo came from. Her favorite song was somewhere over the rainbow. She was always singing it in the car. And I remember about a week before she died, we were, we were coming down the coast road and, or more, and there was, um, a rainbow in the sky.
Speaker 2 00:18:34 And I remember saying to me, why isn't there a rainbow isn't the sky every day, mom <laugh>. And I was thinking, oh, that was your little message to me. So we caught, we have a rainbow was a sign of hope cuz after the rainbow, the rainbow, you know, the rainbow appears and that's where the logo came from and that's where the charity began. And I I'll never, I can never put into, towards the kindness and the support of people when I put it out there that I wanted to set up the charity. I could never people that I had been in school with. And hadn't seen in 10, 15 years, um, friends that I, you know, hung around with when I was small, everybody just wanted to help. You know? And I mean, when we set up, the very first thing was like, we set up the, the Facebook page and that's about the charity and it was it's 11 years now since July, we set up the charity, but the kindness that we still get to this day in the support that we still get to this day, people that have never been affected by meningitis, but wanted to help us to make a difference, you know, believed in what we were trying to do and to remember Ava, and it's just been so amazing, the support that we've been given over the years
Speaker 1 00:19:47 And it's, it's a lovely thing for her to have such a wonderful legacy. Yeah. Like Ava in effect, I'm not giving you any credit now Ava's out there saving lives. Do you know?
Speaker 2 00:20:01 Absolutely. <laugh>
Speaker 1 00:20:02 Yeah. Creating absolutely. Her rainbow awareness and yes. Yeah. I actually now every time I see your logo, I have it here in front of me and I'm just smiling at it. It's it's yeah. So beautiful and hopeful.
Speaker 2 00:20:14 We, yeah, that's what we want. Hope, hope there is hope that's. We want people to, we want people to, to know that we're there and I still remember, but the very first phone call I got from somebody who had, um, read, read something we shared online or something and, or heard me do a talk and said, um, when my child got sick, I knew about meningitis. I went to the hospital and you know, because of you, you saved my child's life or, you know, you, you had me, I acted because of what you told me to do when it was meningitis. And I still remember that phone call and or the phone call from my mother who said, because of your support services, her childhood survived. And I still Reem, I still remember that that phone call from a woman who said, my son has a friend now because their childhood, their little boy been and play therapy and will learning to kinda, you know, mix better and stuff. So days like that, you know, make it all worth wide.
Speaker 1 00:21:13 Absolutely. And I just want to take this little chance to explain to people exactly what meningitis is. So meningitis is basically an infection of the meninges. So they're the protective membrane surrounding the brain and spinal cord. You can have viral or bacterial meningitis. So the viral type initially is just as scary as the bacterial, but usually it's not life threatening. Bacterial meningitis is extremely, extremely dangerous. It urgently needs antibiotic treatment. And it's something that obviously we vaccinate for in this country. So we have been given the men in G C vaccine to babies in the primary cycle since 2000 and the men B vaccine was introduced in 2016. There's also the PCV vaccine, which is also included in the primary immunization schedule. There are some vaccines, which aren't on the main schedule because there is other forms or strains of infection that can cause meningitis. So they would be meningitis, a X, Y, and Z. And you know, the numbers of those have been increasing over the past years on a kind of mild to moderate level, to the point where the C w Y vaccine is now given to children who are in first year of secondary school. So that is I suppose, the technical breakdown, but Chevon, do you have anything to add to that just before we move on to the symptoms?
Speaker 2 00:22:59 Yeah. So babies and children up to age five at the highest risk age group, contract meningitis 16 to 24 year olds at the second highest risk age group, and over 60 fives are the third highest risk age group to contract meningitis in Ireland. But actually anybody of any age can contract meningitis, you usually see an increase in cases of bacterial meningitis, uh, back to school kind of September winter time. And there's an, um, an increase usually of viral meningitis cases during the summer. But it's really important for people to get to know the signs and symptoms, what to look out for, if you are concerned, get medical help immediately. And the most important thing is to trust your instincts with the symptoms of meningitis, someone, you know, in the early stages, it can present itself like a flu like symptoms. But what happens with meningitis is that gradually over hours, someone is getting sicker, um, and nothing is working, you know, to, to bring down their temperature or stuff like that.
Speaker 2 00:24:03 So time is of the essence. When it comes to meningitis within six hours, I've been sick. You know, we lost Ava to meningitis. Um, and one of the most important things, uh, before we go into the sentence is to ensure that your children's vaccinations are up to date. So there has been a, a decrease in the uptake of vaccines in the last two years, probably due to COVID and people not being able to get access to the doctors and stuff like that. So it's really important that people are aware that it takes five visits for your babies to be fully vaccinated with their schedule. Um, and just to ensure that they have completed their full round of the vaccinations, because you know, being vaccinated is, is, is what can save lives. So that's all that kind of stuff is really, really important when it comes to meningitis, but know the signs and symptoms and trust in your instincts is probably the most important message that, you know, I can give today
Speaker 1 00:25:01 And we're all busy and, you know, you can easily fall behind in your vaccine schedule. If you have multiple kids, you can just get a bit kind of lost in it all, but important to emphasize there that you can catch up on vaccines, you know, just because you've missed one, you just need to go back to your GP and they will do a catch up program for you. All the vaccines are still available.
Speaker 2 00:25:26 Absolutely. Yeah. And I can talk to the symptoms, I suppose. Really? Yeah. So people need to remember with meningitis, first of all, that the symptoms can appear in any order. And some of the symptoms may never appear at all. So the misconception for years out there about meningitis, but there that there always had to be a rash. So the rash is obviously to do with sepsis, which is the blood poisoning, which can go hand in hand with meningitis. Um, but meningitis does not always produce a rash. And if a rash does appear, it's at a very late stage and there's urgent medical attention required, and you need to go, you know, get straight to the hospital if someone's presented with a rash. So, you know, you would've seen how you could do the glass test, where you rub the, uh, roll the Tumblr over the rat that might appear in the skin.
Speaker 2 00:26:20 And it does not fade under pressure. That is the, the rash that, you know, you need to be aware of that does not fade under pressure. And you do need to keep checking if someone is very sick, you know, to make sure that the rash doesn't appear, it can appear in different places in the body and just keep checking. But with babies and toddlers, um, I suppose refusing feed, uh, temperature, but cold hands and feet, a very high pitched cry, which is something that a lot of our parents have described over the years. If their, you know, babies have, have, uh, presented with high pitched cry, um, very limp. It doesn't like being held, uh, a bulging Fontella, which is the soft spot on top of the head as some of the symptoms with babies and toddlers and, um, with children and adults, uh, uh, fever, headache, vomiting, muscle pain, temperature, colds, hands, and feet.
Speaker 2 00:27:18 And you know, it really to try and explain it, you know, it's like seeing somebody when they're not usually like this, when they're sick, you know, they can bounce back sooner or they're, they know they we've heard people describe about this headache, that they've never experienced anything like it before in their lives. Um, and that's, you know, we've heard that a lot around the kind of teenage, um, age group. And, um, they, as I say, gradually over hours, gradually getting sicker, then you need to get, you need to get medical attention, you know, and if you're very concerned, you know, to go straight to the hospital, um, to, and when you go in there to say, and I've always said this, and this is me as, as a mom, I'm saying this, say to them, could it be meningitis, you know, leave that word in their heads and let them, you know, rule it out, let the medic people rule it out. Um, and you've done everything that you possibly can, you know,
Speaker 1 00:28:16 And stiff neck and bright lights. Um, yes, I I'm mentioning them cuz as I said to earlier, I'd fire meningitis as a child. And um, I definitely experienced those two particular symptoms, but obviously not all, as you said, not all symptoms appear. So it's, it's a bit of a, a mixed bundle and that's something I'm really gonna take away from talking to you today that it's really about the progressive illness, you know, the, the kind of rapid deterioration. So the importance of keeping a close eye on a child that's sick and getting worse. And just if in doubt, just act just no one is ever going to give out to you for bringing your child to hospital because you're worried, you know, absolutely people are there to help you. It's their job. You're not for
Speaker 2 00:29:12 Annoying anyone. You, you know, your child best, you know, your child best, you know what they're like when they're sick and even as teenagers are adults, you know, you know, something's not right. You need to trust your own instincts, believe in yourself and just be the voice for your child. You know, just say, they're not usually like this to the sick, you know, they usually bounce back or they can't get the temperature down or, and it's not, we're not, it's not, I'm not here to, you know, to frighten people. It's not here. It's to make people aware that they know that, you know, meningitis is out there. Um, and just to be aware of what to look out for, to trust your instincts is, is, is so important, but not to scare people, but you know, ensuring your children's vaccinations are up to date and being aware of the signs and symptoms and acting. If you have concerns are the most important things you can do when it comes to meningitis.
Speaker 1 00:30:04 Yeah. I think, you know, it nearly needs to become part of your assessment process. So mm-hmm, <affirmative>, I always <laugh> call things, things like this because I'm a pharmacist. So that's what we do work. You know, if someone comes in with a rash, I'm going to, I'm gonna run through every type of illness, you know, to, to rule them out based on how the rash is looking. But as a mom, I don't think anyone needs to be a pharmacist to do this. So, you know, you're looking at things like fever, you're looking at things like, is your child alert or overly drowsy or confused, have it in there that you're looking for meningitis every time a child gets sick, look for meningitis, you know, rule it out and then go on to no it's near infection. It's throat infection. Yeah. Or they're actually just cranky, you know, <laugh> like, but just have it as part of your process that every time your child is sick, just rule it out, you know, make sure.
Speaker 2 00:31:08 And, and, and also it's a big thing for the student age group, I suppose, to empower them, to mind their friends when they are away from home and the staying in digs or to staying, um, you know, um, on campus in college. Um, and to make them aware, you know, to mind your friends check on them a lot of the time you would hear that it can, you know, it can present the symptoms as a really bad hangover, you know, in, in that age group. And they've been out the night before and they're just really unwell and they're not, you know, just check on, check on your friend when you're in college and you're sharing a room or sharing a house with them, are you okay? Do you need anything? How are you feeling now? You know, because they don't have the support of their parents or guardians or whoever around them. Yeah. And, um, you know, what's that age you do, you think you're invincible. Yeah. You know, and you're, you're living your best life. So just to keep an eye on your friends when you're not at home, uh, if they're sick,
Speaker 1 00:32:06 That's such an important point. One more thing, the prevalence now. So how common is meningitis at the moment?
Speaker 2 00:32:15 So what we, we have seen obviously a decrease in case the meningitis, since the vaccines have been introduced. And then in the last two years, obviously when people were locked away at home during COVID and everything like that, and people weren't mixing because obviously meningitis airborne. So spread through C in season and people weren't mixing there wasn't that many cases, thankfully, you know, for us. But once the country kind of opened again, we have seen cases appearing and a significant increase in cases of viral meningitis have been occurring in the last probably, probably since January, February. So, and now we're coming into the winter months. People are coming down with colds and flus, their immune systems be weaker. So the more susceptible to picking up other kind of infections that are out there. So, you know, we, we would expect to see, um, cases again, you know, slightly rise in, in the common months. So now more than ever, it's so important that people don't confuse symptoms of COVID or flu symptom, which, which could be meningitis. So to make themselves aware, you know, cuz I see it, I see a very challenging few months coming ahead, you know, with the weather and, and all that kind of stuff. So people just need to, there's a lot of feel alert. Yeah. Stay
Speaker 1 00:33:32 Lack of immunity from kind of two and a half years of has been two and a half years. I dunno. I dunno how many years I've lost my exist stage. <laugh> one big last year. Yeah. Yeah. But you know, so we don't have the same resistance to things like flu. Yeah. Where some people obviously will just offer mild doses. So we haven't built up that natural immunity. So it could be messy. Um, one thing just to highlight there as well, obviously the difference between viral and bacterial meningitis. So we know that the difference is that bacterial and meningitis, you know, has much higher mortality rate. Um, and also, um, can cause permanent damage. So we know that viral obviously is less likely
Speaker 2 00:34:17 It's non non-threatening is non-life threatening, but
Speaker 1 00:34:20 The problem is they present the same. So
Speaker 2 00:34:23 They do, they do at the early stages. Yeah.
Speaker 1 00:34:25 Yeah. So when you, I suppose the important thing is, is to react quickly regardless, there is only one way to find out if you have viral or bacterial meningitis and that's by attending the hospital realistically mm-hmm <affirmative> so
Speaker 2 00:34:41 Yeah. And, and people need to understand as well that with, with meningitis, sadly one in 10 who contracted will, will, will die. And one in three, you know, to five or left or long term life changing
Speaker 1 00:34:53 That's bacterial.
Speaker 2 00:34:55 Yes. For bacterial. Yeah. Yes. And then, and then with viral, you know, will I feel is probably taken not, not as seriously as, but with someone, you know, there there's a, there can be a long road of recovery after viral as well. And you see people with chronic exhaustion and headaches and different kind of side effects after viral. So people need to know that they need to give themselves time, you know, when they need to rest and give the those time to recover. And I suppose that's where we are. That's where the charity is there to step in to support. So what we do is we have an amazing, amazing support officer, ER, and she's there to give you support. So if you know, some people just want a phone call, they just wanna talk to somebody, you know, and talk to what they've been through.
Speaker 2 00:35:42 It, it, it can be extremely traumatic, you know, after being affected by meningitis and not just the person that's been affected, but their siblings, the parents who have this fear that their children were sick or siblings who had a brother, sister who have been in hospital for weeks and they haven't seen them and they have this fear. So we're there to support the whole family for as long as they need. And we've a wide range of support services available for them. And we also run workshops, um, online support workshops for parents who have been through, you know, such a traumatic time. And then of course, you know, there also to support our wonderful Bri families who I suppose are on the same journey as me for a chat or catch up or a lot of the time they wanna do something to remember the person, you know, that they've, they've lost. And we like to be able to help them support them if they like to do it in the community, do something to remember them. And a lot of the time, the number than us, they want to create awareness.
Speaker 1 00:36:36 And how can people support your charity for people, you know, who have been, say untouched by meningitis, but listening to you today, you know, are just so moved by the work that you're doing.
Speaker 2 00:36:48 You know, one of, one of the big things for us is to get our awareness into communities, you know, and if someone wants to contact us to our social media or, you know, and leave a message to something as simple as to go to the local pharmacy and distribute our awareness card, we often send out packs to secondary schools and someone there takes charge of the distributor awareness card. And one goes home in every school bag we're available to do awareness talks. I do awareness talks. I, I do paramedic training, wait for training paramedics. I do pharmacy pharmacy training, which is all available. Everything's free, it's all available. I do a lot of talks for kind of senior years and secondary schools, you know, getting like to catch them ATY or leaving cert before they're going to college to make the meningitis aware I can do talks in the workplace, talks for people's wellness days, um, to make people aware and for every person to have a one of our awareness cards or, or is aware of meningitis or some people who hold events for us.
Speaker 2 00:37:46 So they wanna hold fundraising event first us and will come down and support them and meet people. So, you know, we're any kind of support is greatly appreciate, especially in the last few years with what we're trying to do. We're the only charity in Ireland, the only meningitis charity in Ireland and the last few years have been so challenging no more than any other charity or any business. It's been so challenging for so many people. We we're gonna keep fighting to try and get that awareness out there, cuz it can save lives. And we want people to know that they're not alone when they've been affect by meningitis. So that's what we're gonna keep doing for as long as we can.
Speaker 1 00:38:18 So the website is just act for men
Speaker 2 00:38:21 WW. Yeah. Act meningitis. Yeah. Um, or social media, Facebook and Instagram is act for meningitis. And then our Twitter is act number four meningitis and even a simple post that goes up and someone shares it on their page is making an extra person aware about meningitis, you know, and the, the misconceptions that are out there that meningitis always produce the rash, you know, that kind of messaging to collect that message. I think that was the biggest shock for so many people. When I did the talk over the years was there has to be a rash or only babies can get meningitis. You know, there was so much confusion out there. So those kind of things, a simple share, it could save a life. She now could save a life.
Speaker 1 00:38:59 I suppose we can ask anyone who's listening to this today to share it with every single person that <laugh>. Yeah. Well I was going to say, who actually has a child or a family, but that doesn't even make sense, everyone, everyone, because every age group is affected by meningitis. So yeah, I would beg people to just spread the word. I think you've given us some incredible wisdom today and yeah, your story just is so moving and I'm so happy that Ava has such a strong, strong legacy and I'll never look at that rainbow on the logo again now without smiling. Cause yeah. I just think you can do nothing more positive than to turn such a horrible story of grief into something that is enabling other children to avoid such trauma, um, and other families. So just thank you so much on behalf of all parents <laugh> and everyone for being so brave and strong and standing up because really, and truly it is saving life.
Speaker 2 00:40:06 Ava loved life. She loved, I mean she sang, she danced, she shocked her way to life. She painted her nails. We did everything together and to honor her for short years that she had with us. But to remember her and the impact she had, she was always going around, minding the small little children, holding her hands, getting them up the stairs, looking after them. And she was a kind, kind gentle soul. And it's so important for me. You know, that she'll be remembered. It's been a long, long road, but she's with me every day. I talk to her every day. I'm sure I have her played a lot of the time. <laugh> she's sitting there beside me and she's definitely guiding me. She's definitely guiding me
Speaker 1 00:40:47 For short years. It may seem like, but an absolute long lifetime of impact. Um, yeah. Thank you so much, Yvonne. Okay. You've heard of people. You need to share this story because it's so, so important. Anyone, you know, that could benefit from being a little bit more meningitis aware just to get them to have a little listen. Thanks very much for Cho for joining us today.
Speaker 2 00:41:14 Thanks Gina. If
Speaker 1 00:41:15 You enjoy listening to a wonder wrap podcast, I'd be really grateful. If you could follow or subscribe and leave a review, it really helps to support the show. Thank you.
