RECORDED Wed 16 Jul 2025
SUMMARY KEYWORDS
Bone marrow failure syndromes, Maddie Riewoldt’s Vision, telehealth support, pediatric oncology, aplastic anaemia, immunosuppressant therapy, bone marrow transplant, emotional wellbeing, school attendance, medical research, patient support, rare conditions, educational outreach, family advocacy.
SPEAKERS: Mei Ling Yeh, Megan Gilmour, Jess Pearce, Amy Coote
Megan Gilmour 00:00
This episode is proudly brought to you by the TPG Telecom Foundation, dedicated to creating opportunities to improve the health, wellbeing and education of Australian communities in need.
Hi, I’m Megan Gilmour, MissingSchool Co-founder and CEO, and this is Live & Learn. This is the podcast that unearths insights at the intersection of health and education, building a powerful alliance to keep kids with complex health conditions connected to school from anywhere. The podcast is recorded on Ngunnawal land, and we acknowledge and pay respect to the traditional owners of this land and the land on which you’re listening.
Welcome to our weekly webcast, a place to zero in on the interplay between health and education and to amplify the voices of those supporting school students to navigate their educational journeys despite complex health conditions.
Today, we have on Live & Learn Amy Coote, Jess Pearce and Mei Ling Yeh. Amy Coote is the Chief Executive Officer of Maddie Riewoldt’s Vision. She’s a passionate for purpose executive and founding member of one of Australia’s leading giving circles. Over the past decade, Amy has led fundraising and development efforts across causes including medical research, youth mental health, cancer support and education, helping to raise more than $25 million. She brings deep experience and a strong commitment to driving positive change, especially for families facing bone marrow failure syndromes.
Mei Ling Yeh is a clinical nurse specialist in pediatric oncology and telehealth nurse with Maddie Riewoldt’s Vision. Mei Ling has been a pediatric oncology nurse for almost 20 years with a strong focus on evidence-based nursing and patient and family-centred care. She’s especially experienced in the treatment and nursing management of hematopoietic stem cell transplants and is passionate about improving care through cultural awareness and compassion. Her own background is as a Taiwanese Australian, and her work with families from many cultures brings a unique and thoughtful perspective to the support she provides.
Jess Pearce has been a passionate Disability Support Worker since 2017. She lives on the northwest coast of Tasmania with her husband and three boys, including 13-year-old Seth who was diagnosed with a bone marrow failure syndrome called aplastic anaemia. All three of Jess’ children have received care from specialists at the Royal Children’s Hospital in Melbourne, with two still under their care. When she can, Jess enjoys long walks, horse riding and road trips with her husband. Welcome Amy, Jess and Mei Ling, we’re so excited to have you on Live & Learn today.
Amy Coote 02:53
Thanks so much. Megan. Really excited to be here.
Megan Gilmour 02:56
So today we’re here to talk about supporting school connections for students with complex medical or mental health conditions. So, let’s jump straight into the first question. Tell us how bone marrow failure syndrome impacts kids and why it’s something every Australian needs to know and care about.
Amy Coote 03:13
So, every two to three days, an Australian is diagnosed with a bone marrow failure syndrome, and distressingly, most of these are children and young people. Sadly, there is a 50% mortality rate. Thousands more live with complex medical issues and ongoing risks to their health.
We want more Australians to care about bone marrow failure syndrome so patients and families across the country can get the support that they need, and when their social network understands more about the condition, they can provide better support for those families during diagnosis, treatment and ongoing care.
Megan Gilmour 03:54
That certainly is something that every Australian needs to know and care about. And with those numbers, and obviously, you know the outcomes there that you mentioned, this is something that we really need to pay attention to, and as we’ll talk about later, I have a personal connection to this particular topic.
So many people probably assume things about bone marrow failure syndromes. What’s the million-dollar question that any of you get from parents or loved ones when their child experiences or is diagnosed with bone marrow failure syndrome?
Mei Ling Yeh 04:32
I think I will be the one to answer these questions. The one we hear over and over again is, is my child going to be okay? Is he or she going to survive? And this is very raw and honest to fear. Most of parents have been, as soon as they hear the diagnosis, and really, who wouldn’t feel that way, right?
So, most of the families have never, ever heard about bone marrow failure syndrome before, and one day, their child is just tired or getting more bruises than usual. The next day, they might be sitting in front of the doctor, hearing words like aplastic anaemia, Fanconi anaemia, congenital neutropenia, for example, and the words like immunosuppressant therapy or bone transplant and this is a totally wild situation happened in their world.
And other questions come up a lot, like to me, personally, I really prove that is a true thing, is a parent’s guilt. Most of the parents, they would think about, what exactly caused this – did I do something wrong? Is there hereditary where my other children will get impacted too.
So, this kind of uncertainty of future, and also will my child ever live a normal life again? So, this is kind of so huge emotion weight that comes with it, and parents often feel lost, scared and very alone, and that’s why we are here, and the support, information, connection and to others going through the same thing is so important.
Megan Gilmour 06:13
Thank you. So, there’s some responses to that question that match other conversations that I’ve had across different conditions. And, you know, will my child live a normal life? Obviously, will my child survive and that feeling that you express about feeling alone and uncertain, and obviously, sometimes, in some cases, it’s a huge shock. I have a question there. Can diagnosis happen shortly after birth as well?
Mei Ling Yeh 06:46
Yes. Bone marrow failure syndromes have got two different categories – acquired and inherited, and majority of our diagnoses are part of inherited. For example, Fanconi anaemia, Shwachman-Diamond syndrome, Diamond-Blackfan anaemia, and congenital neutropenia. So that’s the reason our patients and families are facing huge issues in these sectors.
Megan Gilmour 07:19
Yes. And you can back me up or add to this, for those of you who don’t know, the role that bone marrow plays is bone marrow makes our blood cells. So, this is a life giving, absolutely life giving, element of our human body and essential. So, it’s not negotiable, right?
Mei Ling Yeh 07:46
Yes. So, so sorry. I should clarify from the beginning that our bone marrow is the mother cells of our system, right? And it’s supposed to create healthy and adequate functional cells to produce red cells, white cells, platelets and so on. Since it is not producing adequate and healthy cells, and that’s where the issue’s coming from.
Megan Gilmour 08:15
Thank you so much. Anything else you’d like to add Jess or Amy to that one,
Amy Coote 08:21
I think, just to sort of lean in a little bit on what was alluded to around that sense of isolation for families. Being rare conditions, often no one’s ever heard of it. It’s not just them personally processing the diagnosis of their child, but then the burden of really trying to explain to loved ones, to friends, to, you know, school peers and so on.
Often, they try and pigeonhole a diagnosis into a cancer bucket, or just because they want to try and understand what it means. And we’ve had families share with us that they’ve actually really withdrawn from their social group because they can’t keep explaining it over and over again, or the burden of that explanation.
And I think that’s where Maddie’s Vision has played such a crucial role, because our tele support service and our new peer support program really provides a safe space to connect with people that understand everything there is to know, I mean Mei Ling, from diagnosis throughout treatment and to long term follow up, but that peer support, being able to connect with others going through the same thing has been such an important inclusion in our support services to families across Australia.
Megan Gilmour 09:40
Yes, and bravo for that. I completely relate to what you explained there – that trying to explain to people what this is, and having to try to explain it, you know, over and over again is really exhausting.
And also, you know, there are obviously physical signs, but in many ways it’s invisible, right? And people don’t see that, and yet, it’s just so critical to life, I think that’s the most important thing for people to know here.
Mei Ling Yeh 10:16
Yes, thank you, Megan for touching on that point. Most of our patients that, for example, with a severe aplastic anaemia, they look totally fine,
Megan Gilmour 10:28
Except for those petechiae [bruising].
Mei Ling Yeh 10:31
And then people would always get the question, oh, they look okay to me, why do you say they are so sick? People just couldn’t get an idea and understanding that they could be critically ill, even though they look fine physically.
Megan Gilmour 10:49
That’s right, and I’m sure Jess will get into this soon, is that whole thing about people feeling like you’re overreacting and when you’re sort of trying to hold that space for how critical this actually is.
Mei Ling Yeh 11:01
Exactly,
Jess Pearce 11:02
Yes, I think we’ve probably got a couple of bits where it’s we can sort of double down on some things that have just been mentioned. I mean, if you go back to the whole feeling of being isolated, that sort of part of it is almost doubled for us, because we live in Tasmania.
We could not even find a medical professional to diagnose Seth in Tasmania. Nobody knew what was wrong with Seth. We couldn’t get a diagnosis until we went to Melbourne. And then, you know, it’s the traveling back and forth, and the specialised care that he needs is in Melbourne, and it’s not here where we live. So that isolation is even a bit more so for us.
And yes, and when you speak about how they present, they look fine, they look okay. I honestly to this day, I mean, we’re five and a half years into this journey, and I still struggle with quite a lot of mum guilt over the fact that I was aware that Seth was having recurring blood noses for a while, and I was aware that sometimes he would bruise, and I wouldn’t really be sure why he was bruised, but I would look at him and I would say, well, he’s running around playing, he’s eating and drinking, he’s sleeping, he’s going to the toilet, fine. He’s not complaining of any pain or tiredness, like he must be okay. Some kids just bruise and get blood noses. And I for a long time, yes, I still battle with that, wondering how long was he sick for before I actually took him to the hospital?
Megan Gilmour 12:31
Yes, I relate to that. I’m with you on that completely. And the good news is that our bodies just keep showing us those signs. And thank goodness for our kids that that’s the case there, right? And I’d like to get into a little bit later, just, you know, some of those interactions with other people as well.
And I think our protectiveness around our children in these circumstances, and people may be feeling like that’s a bit of an overreaction, because they don’t understand the role that our bone marrow plays and how critical it is.
So, knowing all of those things that people come (with) where there’s a diagnosis, or bone marrow failure syndromes diagnosis, knowing all of the things that people ask about and want to know, parents and families, what’s the most important thing that you want them to know?
Mei Ling Yeh 13:33
I think, can I answer this question? So, I think what I would love them to know is they are not going (through) this alone, and we all understand how isolated this journey could be, and this is very important just to reassure patient and family that they are not alone on this journey.
And then also they are able to get to the right care at the right time, no matter where they live. And it’s very important for them to feel like they are seen, they are heard and supported, not just only medically as well, but also emotionally too.
So, I’m hoping that we can find a team that listens and community that understands, supports them from the diagnosis to recovery and become like what Amy mentioned before. Yes, so that’s what I am hoping.
Megan Gilmour 14:49
I wish I knew you all then [laughter],
Amy Coote 14:54
Yes, I’d like to sort of just build on that, if that’s okay. That for us at Maddie’s Vision, our goal is to reach every single patient and family in Australia. And we’re not there yet, but we have had a 45% increase in patient numbers just in the last 12 months, so our efforts are working, and we’ve just appointed a new tele support nurse to help manage those new patients that we’re supporting, which is really exciting for us to grow to meet those needs.
And I think another thing I’d like to share is that alongside our patient and family support services that we are driving really exciting and innovative medical research alongside that holistic support, and we’re starting to see some of those projects that we funded seven years ago, building towards new clinical trials, so in stem cell therapies, in gene editing.
And often in medical research, we work in a space where you might not see progress within our lifetime, but in 10 years of Maddie’s Vision where there was very little in the way of research funding and no support for patients and families, 10 years later, we’ve got established national support services, educational programs for patients as well as the scientific community and our research funded projects are just really starting to evolve into some very exciting, I guess, progress, but also hope.
And that’s one of the things that you know, alongside that education, resources, and emotional support, being able to give hope through research and ensuring that we have our families share their lived experience as part of those research projects, it really starts to it feels very exciting for us that that hope is becoming really real at the moment.
Megan Gilmour 16:49
Yes, hear hear to that. Hope plays such a critical role in all of this. And I also hear that we’re living in exciting times in terms of the acceleration of outcomes of medical research, and when my son was trying to – we were trying to get a diagnosis, it was like checking one gene at a time, and by the time that he’d finished his treatment, we were close to the whole mapping of the human genome.
So, you know, even in that time alone, so I can just imagine and attest to what you’re saying there about what’s possible now. But it’s only possible when there’s organisations like yours who are going to be able to pull this together. And that’s, you know, a big shout out to what you’re doing there.
Amy Coote 17:44
Thanks, Megan. Well, one of the projects that we did fund was actually a clinical trial to establish a framework for diagnosis of suspected inherited bone marrow failure syndromes. And so that trial was so incredibly successful, saw over 400 patients with suspected inherited bone marrow failure, was able to fast track to accurate diagnosis, but also provide that family with education and knowledge on their genes and how this is, you know, to inform them for future.
And that actually then went on to get significant Medical Research Future Fund contribution from the government to expand to a much larger genetic testing and sort of whole genome sequencing project.
And so for us to have been part of that initial work and to have seed funded that which is now providing national support to families across Australia, it just really shows and helps demonstrate how a small organisation like ours, with only you know, five full time equivalent staff and an amazing network of volunteers can actually start to make real change in both research and patient and family support.
Megan Gilmour 18:57
And that’s exactly what it takes, actually, it just takes that lean, sharp model to trigger off a whole lot of other capacity and just thank goodness for it and maybe I’ll come back to you all outside of this to find out more about that, that genetic component, because we, we ourselves as a family, still have unresolved questions about that, so I’d love to know more about that.
And it’s just so exciting to know that you’re able to have that catalytic effect in a system, a big system, it’s not to be underestimated at all.
So, thank you so much for that incredible input to that important question. Now, this is a bit more of a personal one, I guess, and we’d love to hear from each of you if you can, if you’re willing and you want to.
We’d love to know what brought you into the world of bone marrow failure syndromes and the work in that. And let’s kick off with Jess, because I think you know the answer to this one, but over to you Jess.
Jess Pearce 20:06
Yes, okay, I’ll pick this one off. Yes. So basically, it was the very first day of a brand-new year. It was new years day 2020, and Seth was quite unwell, my son, so he was just shy of turning eight at this stage. Because he is a January baby, he was quite unwell. And as I mentioned earlier, you know, we’d been seeing some blood noses and some bruising and things going on with him in the lead up to this, but otherwise, he was presenting fine. He was happy running around, playing, eating, drinking, all the things.
It’s just on this particular day he had a very relentless nosebleed. It was really not letting up. He was beginning to look quite pale. And also, the next day, on January 2, we were meant to leave for our first ever family camping trip, and we were going all the way down the west coast of Tassie to Strahan, and it’s quite remote down there, and I just thought that’s a really long way from any good help if this is something. So, my thought process was, let’s just go to the hospital. We’ll get checked out, and then we’ll be fine. We’ll be right to go.
Didn’t really happen that way. Yes, so they, we took him to our small local community hospital. They did some blood tests. It took a little while to get the results, but when they did, a doctor came to see me, and he asked me to follow him into a small room away from Seth. So, a lovely nurse waited with Seth. I went with the doctor, and he sat down, and he straight out, told me that the blood test showed that my child had leukemia and that we needed to get on the ambulance plane and fly to Hobart, to the Royal Hobart Hospital.
So that’s yes, where it kicked off for us. And as you can imagine, I was I, yes, I was a bit of a mess. I thankfully, within a very short period of time, had all of my amazing family there. They were helping to keep Seth distracted and happy while I was trying to sort of, I guess, get myself together, yes, but we did get on the ambulance plane. I am not much of a flyer. I don’t really care for flying, and I had the paramedics offering to give me a little something, because they could see that I wasn’t very keen about this tiny, little plane.
But we flew to the Royal Hobart. He underwent his first bone marrow biopsy, and he underwent his first transfusions from our amazing Aussie blood donors, and then we waited for the bone marrow results. And in that whole time, I had pediatric oncologists coming to meet with me, and they were talking to me about having a child with leukemia and what that’s going to look like, and all of these different things.
And the doctors came into the room, I think it was perhaps maybe like a day and a half to two days later, it took to get the results, but they came in and they said, well, the marrow results actually show that there’s no cancer there whatsoever. So, he certainly doesn’t have leukemia.
But then they were saying, at the same time, we don’t know what the problem is. They said his bone marrow is just completely empty. It’s not making any cells. His platelet count is severely low, and that’s why he can’t stop bleeding and bruising. They said his hemoglobin, his red blood cells, are so low that he really shouldn’t be awake and functioning. They said he’s just perhaps not very symptomatic to that.
Yes, but they were unable to diagnose him. So that was when we moved on to the next stage, where we were transferred to his specialist at the Royal Children’s Hospital in Melbourne. We traveled over there and met the team there, and it wasn’t until then that somebody mentioned the words aplastic anaemia and bone marrow failure syndrome and began to talk to us about those.
They didn’t diagnose him straight away, his specialist wanted to just give it, I think it was a couple more weeks. He said there’s a very slight chance that his immune system is just having a bit of a glitch, and it may kick back into gear. So, we actually got to come home to Tassie for another couple of weeks.
At this point, we were traveling into the hospitals every day to two days for more blood transfusions, because he just was not holding up the donated products that he was getting from donors, which also meant, horrendously, he was being cannulated almost every day to every two days. And for a child that’s all of eight, that’s pretty tough.
And still, I would be taking him into the hospitals every day needing blood products, and every day, I would have to explain to the medical professionals, we don’t have a diagnosis. We don’t know what’s wrong. It might be this, but we don’t know. And yes, anyway, we ended up back in Melbourne with a diagnosis of idiopathic, acquired aplastic anaemia.
So, they’re saying that, basically, it’s just bad luck. There’s no actual reason why this has happened to Seth, which is why he comes under the acquired category. And then we moved on to talking about treatments.
Megan Gilmour 24:59
That’s a big, big story, Jess, and you could just swap our names out, and I was on the flight too with my child. I get it and thank you for sharing that with us, because it doesn’t matter how many times you retell it still hurts. It really does.
Jess Pearce 25:24
Absolutely
Megan Gilmour 25:25
And the experience for a parent in this circumstance is not to be underestimated. It’s a very, very fragile time and that shock that we talked about earlier with Mei Ling as well.
So really, really appreciate you going into the depths of that and acknowledge how hard that really is, and the fact that you’re here talking to us shows how much you care as well and for other kids, and what the best for them, too.
Amy, and Mei Ling? Did you want to say more Jess?
Jess Pearce 26:04
No, no, you’re right, I was just I was going to say that it’s taken me – it took me a little while, obviously, to get to the place where I am now, where I can talk about it, but now that I can talk about I love to talk about it, because just not enough people are, you know. So, yes,
Megan Gilmour 26:17
So, yes, yes, yes, absolutely.
Amy Coote 26:20
And we’re so grateful to Jess and Seth and her whole family and so many other patients and families that, you know, stand side by side with us as we try to improve outcomes for, you know, other patients into the future and but Jess has been such an amazing advocate, and she’s in the media, she’s on the radio, she’s doing anything she can, yes, and I think that’s just so important. We’re so grateful.
Megan Gilmour 26:47
Yes. Yes. It’s the personal stories that add weight and gravity to these things. And when, when we’re talking about real people and the real things that that we go through, Amy, what brought you into bone marrow failure syndrome or working in that?
Amy Coote 27:07
Well, Megan, I have a pre children and post children career. It’s really as we all know, as mums, it changes you, and you start to look at life a little bit differently. So, I had a very successful career in professional event and conference management and was traveling the world and organising all of these amazing events and but mostly in the medical field.
But after having my two beautiful kids, who are now 15 and 13, I really was looking for something that, you know, aligned more with my values, and somewhere where I felt like I could make a difference and be a role model for my kids.
And so, I stumbled across this world of for purpose, which they certainly didn’t talk to me about in Ballarat in the 90s, when I was growing up, you know, in the career conversations. But you know, I couldn’t be more grateful to have found this amazing world where I can work with incredible organisations and incredibly passionate people to make a positive impact in the lives of others.
And over the last 12 years, I’ve worked in, as you heard in my bio, in youth mental health, in with cancer, organisations with education, primarily, always with children and young people or healthcare. And so, the Maddie’s Vision board actually came to me in sort of mid 2022 and said, we’ve got this opportunity to come and join as our CEO. Are you interested? And I said, absolutely.
But it wasn’t until I joined the organisation that I truly started to really understand and appreciate the impact of the Riewoldt family who have channeled their grief of losing Maddie into something beyond their expectations. They just wanted to help a few people and try and improve treatments.
And then 10 years later, you know, all this incredible work has been achieved. And so, you know, I couldn’t feel more privileged, honestly, to be in this seat and working alongside amazing people like Mei Ling and Jess to really try and drive important change for patients and families into the into the future.
Megan Gilmour 29:27
Yes, thank you for that, and I love this part of the conversation. It always just makes my heart skip with joy that you know, again, sometimes out of these tragic circumstances, that we can create transformation through that and through our own lived experiences and engage with community in a way where we can actually see effort to reward really quickly and in such a significant way. So, I want to shout that out as well, that making purpose bigger than the problem, and what it is to work in purpose for ways.
And what I also notice in these conversations is that they’re mostly with women. I just do, I always point that out on calls, women are out there doing some phenomenal work as well as all the work that we do with our own families, whether that’s our elderly families, our children or whatever. But it’s also out there just really getting after that change that making that change in our systems as well. So, yes, little shout out for that.
Amy Coote 30:47
We’re all, we’re all women at Maddie’s Vision, all mums. It hasn’t been done on purpose. It’s just evolved that way.
Megan Gilmour 30:53
I see it in every charity, especially the small ones. And I’m going to be mobilising something around that, a conversation around that as well, because it’s, it’s hidden in plain sight as well. I know that we’re hearing much, much more about women’s, women’s roles and the overrepresentation in certain things, and the underpayment and certain things.
But I think there, for me, it’s this aspect of the incredible catalytic work that women are doing at the forefront to actually change our health systems, to actually change the profile of diseases. And the weight of this and that work in that I don’t think is showing up as it should, and as I’m seeing it, especially because I’ve just been doing these conversations and it’s so similar across every organisation, so I think that’s something that’s really worth talking about.
Amy Coote 32:04
Yes, well, one of the things we’re incredibly proud of also is that more than 50% of our Maddie’s Vision funded researchers and members of our Center of Research Excellence in bone marrow biology are women, and it’s very exciting for us to see these incredibly bright, dedicated, amazing young women, emerging researchers, this incredible talent, that we’ve been able to provide that funding for, for them to start to realise their aspirations in medical research.
And another area that you know, I think, is really important is that we’ve been able to support a couple of our researchers through their maternity leave and through having children, being incredibly supportive through our scientific advisory committee to enable them to have that support after they’ve been able to pause their research whilst having a family. So, yes, its very important to us to facilitate that.
Megan Gilmour 32:58
That’s right and change the way workplaces operate. Or it’s more than workplaces, right? It’s like enabling those, the recognition of a woman’s life and how we need to change our organisations and approach to things, our models of how things are done, to enable this incredible work and effort that’s going on across communities as well.
I think that there’s some really important stuff there, and I’m getting a little bit off topic, but because you’re all so amazing, I just get a bit excited. So, I really wanted to pull that out.
Mei Ling, what brought you into this world of bone marrow failure syndromes.
Mei Ling Yeh 33:46
To be honest, I kind of stumbled into it, but once I did, I never looked back, of course. As you have been mentioned before from my bio that I have been working in pediatric oncology and palliative care for many years, and over time, I started to see more and more kids coming through this area, bone marrow failure syndromes, and they were not like other patients.
Their journeys are often longer, more complicated and way less understood. And less supported resources around as well. So, there was the real gap, I realised, and it’s not just in clinical side of it, but also in emotional, practical support for whole family.
So, the real pulling me was to see how isolated some of this this family felt, and I realised they need more than just hospital visits or regular check outs. They need someone to work alongside with them, help them to navigate the system, the unknowns, and connect them with others and try to assist them, actually, we help each other to advocate for their needs.
And that’s the reason I stayed at Maddie’s Vision, and it has been giving me a chance to focus on these families and to build something really meaningful to support services that could wrap around them no matter where they lived around Australia.
So, I really loved this job, and the kids, the family and the stories, they stay with me. I think Amy could tell you more, because I always go to her with all my stories, yes, and I really need to shout out that, that she’s really determined and has got the vision to guide our organisation. And I think that’s where we are, and I really appreciate that, to have someone supporting me to do what I would love to do. So, yes.
Megan Gilmour 36:05
Well, thank you so much. And the thing I heard there that I love is that alignment between clinical and more softer care. I’ll just say that’s not necessarily the right phrase, but it’s that thing that’s missing right to have that embodied in support is incredible, because both kind of need to happen simultaneously. And I think that’s one thing I’m hearing that you do as an organisation really, really well, to embody that clinical but also humanity of support through each person. Just that’s gold. So yes,
Amy Coote 36:49
Can I add one more thing on that Megan? I think one of the things that we are very, very aware of is that our patients and families might be lucky to get 10 minutes with their haematologist, and often it’s a very complicated conversation and question, you know, and they don’t know kind of what to do next or what to ask.
And that’s like, honestly, I don’t know what our tele support and peer support services would be like without Mei Ling she has been absolutely instrumental to like to the support that families like Jess and you know, so many others have received, but helping families work out, what do I ask at my next appointment to make sure I feel informed, I feel confident, and I’m going to walk out of there with the answers that I need to make the best decisions for myself and my family.
And it’s just been game changing, I think, for them to have someone to help guide those questions, you know, and I’d love to maybe hear Jess, you know, from that perspective, I’m sure you can talk to that from your experience.
Megan Gilmour 38:01
Yes, just what’s your biggest hope that’s come out of this and working with Maddie’s Vision? So, your biggest hope for families and loved ones when navigating this, as reflected by this incredible organisation?
Jess Pearce 38:21
I guess my biggest hope I typically always tell people is just that there will be less – there’ll be hopefully none one day, parents that were in my position where I was given a diagnosis for my child, and those words were not just unfamiliar, they were, I don’t know they were unheard of, it sounded like another language.
It was not – I have mentioned in previous interviews – it was perhaps a week or a couple of weeks later, I actually sort of stopped, and something clicked, and I grew up – my dad being a St Kilda supporter, and it was just all it was very sudden one day – I was like, hang on a second, aplastic anaemia? That’s what Maddie Riewoldt had! My child surely doesn’t have what Maddie Riewoldt had?
But up until that point, it was all just, you know, and to be given any diagnosis, I always say this too, any diagnosis for your child is scary, it’s terrible, it’s horrifying. But to be given a diagnosis that nobody knows about, I could not say to one single person whether they were a medical professional here in Tasmania or whether they were someone else, my child has aplastic anaemia and have them know what that was.
But it did not happen. It was, you know, conversation after conversation with different nurses here at Tasmanian hospitals, and it was multiple hospitals because unfortunately, as I mentioned earlier, our diagnosis was at the start of 2020 and if we go back and think what the start of 2020 was, it was peak COVID, and our Tasmanian hospitals were having different outbreaks at different times, and so we couldn’t always go to the same hospital.
And Seth actually ended up visiting all of our major hospitals at one point or another, and still in so many different hospitals, there was not a medical professional who knew what aplastic anaemia was.
And so, my hope is just that there will be less and less parents that are given that diagnosis and have to actually say to a doctor, what is that? What do you mean? Or have to go and look it up to find out what it is.
I don’t want it – I feel like that makes me, I don’t want it to be, obviously, more a more common diagnosis. I feel like some people could interpret what I just said as that, but just, you know, we can’t really avoid it. There are going to be more diagnoses.
So just for those parents to be familiar with those words, and that is why I love to talk about it, and I will talk people’s ear off any chance I get, because the more people that hear those words, the less chance there is that another mother or another parent is going to be in that position where they’re given that diagnosis and they have absolutely no idea what this doctor has just told them is wrong with their child.
Megan Gilmour 41:01
Yes, and to wrap all of that up together, some of those conversations are incredibly brutal. Those clinical conversations are so brutal, and that’s something that I’m hearing this organisation is addressing that as well, so that the brutality of that diagnosis and the way it’s covered in a clinical sense, can also be something that changes, because there are multiple ways you can say things to people, and that education of how to say things, including in front of children, is something that I hope that can be achieved through this, as well as somebody who’s gone through it, because yes it’s so confronting.
Jess Pearce 41:51
It is, it is. I do feel very grateful, like, obviously, I’m sure you can remember too. I remember the day that when we finally made it to Melbourne, and those words were first said, like, I can remember that meeting with our specialist at Melbourne, like it was nothing, like it was just yesterday.
But I am so grateful. I feel like we have landed the most amazing specialist that we possibly could have ever, and I remember that conversation with him, and the way that he went about it, and he was really in touch with what we were going through. And he brings this amazing, I’m going to get emotional talking about him, because we love him so much. He brings this amazing, soft, gentle, yet comedic – he’s very funny, personality to these meetings.
And, yes, I just, I remember he was so great in explaining, you know, everything that he needed to, and he said, you know, your diagnosis is very different from when I give a family, say, a leukemia diagnosis. He said, if I give a family a leukemia diagnosis, I can give them a very straightforward plan or path. I can tell them this is what it’s going to look like. This is what’s going to happen. These are the options.
And he said, but when I give a family an aplastic anaemia diagnosis, I just can’t give them that same certainty or that same knowledge that I can with the leukemia diagnosis. And, yes, he was wonderful, the way that he went about it.
Megan Gilmour 42:37
Yes, sounds like we had the same doctor, but we didn’t. To give you some perspective, my son had the same doctor – and Prof Khan just retired last December, and we went to his farewell dinner, and that was just incredible.
And yes, and I think that’s why I’m saying the education even to medical professionals about how these conversations are held, because across that time, we had so many clinicians, and it was very clear the different ways that those things were talked about, and the different effect it has on you as a human. So yes, and thank you so much for sharing that, and those hopes and desires for other families are just at the center of this conversation.
So how many children and youth are living with bone marrow failure syndromes right now. Amy, you talked about this, it’d be great just to reaffirm it at this point in the conversation.
Amy Coote 44:21
Megan, I think one of the challenges that you know we face as rare conditions, and I’m sure other organisations you spoke to that work in this world, there’s usually not a lot of resourcing to, you know, to you know, fund data, but Maddie’s Vision has been funding, actually, was our very first project that we funded 10 years ago, the aplastic anaemia and other bone marrow failure syndromes registry in collaboration with our partners at Monash University.
Because we know that patient data is not only critical to help demonstrate kind of this landscape of bone marrow failure syndromes in Australia, but also to really facilitate and hopefully accelerate research outcomes for those researchers to know.
So, there’s 600 patients on the database of the registry. It absolutely does not encapsulate all diagnoses in Australia, but we’ve seen some really significant growth in those numbers over the last 12 to 18 months, which is exciting.
So, 22% of those patients are under the age of 18. We don’t decipher between early years, primary and secondary, but 73 of our 150 plus patients at Maddie’s Vision are under the age of 18, and primarily from our perspective, Mei Ling’s working with the parents and the family members and the carers of those of those children.
So, but as I mentioned, we know we’re not reaching everyone yet, but hopefully our efforts to continue to raise awareness and continue to advocate to governments across Australia, to continue to expand those networks within other states and territories across Australia, we will ultimately reach more families and hopefully, of course, encourage more doctors to be inputting their data into the registry.
Megan Gilmour 46:19
Yes. Well, congratulations on that. Data helps, doesn’t it?
Amy Coote 46:24
Absolutely
Megan Gilmour 46:25
And as you say, there’s always this sort of data deficit that we have, and I see organisations like yours trying to actually address that data deficit so that not only to reach people, but to get some concept of the scope of the issue and what needs to be done.
Is there a risk of delayed diagnosis? I’ll turn to Mei Ling for this one. Is there a risk of delayed diagnosis, Mei Ling in terms of bone marrow failure syndromes, or is it picked up pretty quickly?
Mei Ling Yeh 47:00
Oh yes, of course, there’s a risk of delayed diagnosis when you come down to bone marrow failure syndromes, because those diagnoses – the conditions are so rare and the early symptoms can be very vague and/or mistaken or kind of common issues, especially now we are in winter season, right? So, a lot of the patients can be shown as just a virus through cold symptoms.
So that’s kind of very easy to be misdiagnosed and delayed pickup, and the kids might present with things like fatigue, you know, and frequent infections, like what I was mentioned just now, unexplained bruising or slow healings, this kind of thing. And some families go through months or longer of test referrals on second opinions before clear diagnosis is made.
Megan Gilmour 48:03
Yes, thank you. They’re the physical symptoms, I guess, or complications, perhaps, well, maybe that doesn’t cover all of the complications, but could you just take us through what kind of complications kids with bone marrow failure syndromes have, including complications to their mental health and wellbeing – some of that aspect as well.
Mei Ling Yeh 48:34
Yes, there are two, for example, there are two treatment pathways. One is immunosuppressant therapy, and another is a bone marrow transplantation. And most of our patients like going down through the pathway of immunosuppressant therapy, which including the ATG treatment, cyclosporine, and all other chemotherapies during the pre-completion stage of the bone transplantation as well.
And this kind of treatment might cause some cognitive impact for example. They might have chemo fogs or, you know, they have got some other challenges in, in relation to that.
Yes, and if we are coming back to the physical disability related to inherited disability, for example, the Shwachman-Diamond syndrome or Fanconi anaemia, because of its own conditions’ issues. A lot of parents, a lot of kids, they are impacted by neurodiversities or some cognitive difficulties as well.
Amy Coote 49:55
Yes, and I think one of the things that we are often tackling with our families and parents, especially is their emotional wellbeing, and giving that support along that journey as they face things like, as Jess said, Mum guilt, or like what Mei Ling shared, you know, what did I do wrong? Or how do I how do I navigate extended hospital stays when I’ve got two other children? Or, like, how do we do this as a family?
But we’ve seen some, really, in our evaluations, we’ve seen some amazing results in terms of improvement of emotional wellbeing. And the last evaluation we did in May, showed a 93% improvement in emotional wellbeing as a result of sort of the support that we’re providing through both tele support and peer support and Mei Ling’s compassion and care.
And so, knowing that it’s that compassion, that care and improvement in emotional state, alongside education and resources, you know, we certainly are ticking a lot of boxes for those patients and families.
Megan Gilmour 50:55
Yes, yes, and so, so important just for people listening, some of those side effects and complications can be – as we wrap up what we’ve talked about already, risk of infection, huge risk of infection because of immunosuppressants, or because the white blood cell line’s gone, risk of bleeding and risk of fatigue, from low blood cell counts.
And also, Jess mentioned the life-saving transfusions and the cannulations and the actual medical treatments and the effects that that can have on a child’s peace of mind, as well as being physically assessed constantly is a lot Jess, isn’t it.
Jess Pearce 51:47
Yes, it is. I still remember the very last day that Seth was cannulated here in Tasmania. They, by that point, had, I guess, used up all of his really good veins. They had been repeatedly accessed. And so, the final cannulation here at the hospital required an ultrasound machine to try and find another vein that they could access. And yes, I mean, it comes with a lot of trauma, having to repeatedly watch your child go through that.
We were very blessed that both my older sister and my mum are nurses at local hospitals. And on a lot of these occasions, my wonderful big sister would come down from the ward where she was working if she heard Seth was back in emergency. And a lot of the time, she’d just be up on the bed with him and doing what she could to help him get through it. So, always very grateful for that.
But it was a lot to go through, and I always say to people, as terrified as I was when we got to the point in Melbourne where Seth was going into theatre to have a central Hickman line placed. I was terrified of that, and I certainly hated seeing it, these tubes hanging out of my child’s chest.
At the same time, it was the biggest blessing we went through in this journey, because there were no more cannulations and medications and transfusions and blood tests, everything could be done through this central line. So, it was horrible to have that, but it was a godsend having to being able to say goodbye to cannulations and things.
Megan Gilmour 53:18
Yes, hear hear, I know that one too very well. Jess, we’ve talked about in your bio, Seth, siblings. Do you want to just share a little bit about that? Mainly, I’m interested in how the siblings have navigated this. And I heard in that bio that there were some issues there as well. But if you’re, if you’re willing to, if, you like, to answer this one?
Jess Pearce 53:49
Yes, that’s fine. So, my youngest is actually only four and a half, so at the time of diagnosis, it was just Seth and his younger brother, who was five at the time, it unfortunately coincided with the younger one being about to start kindergarten.
And at the time that we had to take Seth back to Melbourne for what we were told was going to be the long stay, we were undergoing treatment this time, and yes, the five-year-old was about to start kindergarten. So that trip, we actually made the decision that he would stay here at home with a wonderful hands-on, rotating grandparents helping so that he could start kindergarten, which was hard, leaving him behind.
But there was a point where he traveled to Melbourne. My mum and her partner brought him over to Melbourne, and at that point, that was at the point where we were deciding with Seth which treatment path we were going to take. And Seth’s specialist explained to us that with the bone marrow transplant, he only prefers to do that first up if there is a sibling who’s a full match.
So, they were wanting to run some blood tests on the five-year-old and see if he was going to be a match. We were told it was a very small chance that he would actually be a match. It worked out quite unfortunate and ironic that my five-year-old wound up in the emergency department at this time at the Royal Children’s Hospital.
So, we were over there, still trying to work out what was going on with Seth. And it was summer in Melbourne, it was hot, um, Seth, was too high risk to go outside, and the five-year-old was a bit over being inside, so I’d taken him outside for some outside time. Those that are familiar with the Royal Children’s Hospital will know that outside there’s a beautiful play area, there’s a nature playground, and there is a cemented area where water shoots up out of the cement, and the kids just run around in it.
My five-year-old was running around in this water probably 30 to 60 seconds later, he came and sat down next to me, and he told me he couldn’t breathe very well. He has a little bit of asthma, so I gave him his puffer, waited for a moment, and then I actually noticed that his lips were swelling, his neck was swelling and had big welts. His face had welts appearing.
And as a disability support worker and as a person who actually had a once off anaphylactic reaction herself as a 17-year-old, I looked at him and I thought, oh my gosh, that’s anaphylaxis. Thank God we were where we were, I just picked him up, threw him over my shoulder, and we ran straight inside down into emergency.
So yes, it worked out. Coincidentally, the allergy team came to meet him and also wanted his bloods. And I said, okay, well, you talk to oncology, because they want his bloods as well, and we’ll just do it all together. So thankfully, they did do that.
Unfortunately, three days later, we did repeat the process. He had a second anaphylactic reaction. And if we go back to the mum guilt that I struggle with so badly, yes, it was three days later, and my five-year-old wanted to go back in the water. And I sort of said to myself, well, let’s be honest, it wasn’t water that gave my child anaphylaxis. And so, I said, yes, okay, mate, it’s fine. You can go and yes, within no time at all, we were back in emergency, repeating the whole process. The allergy team did their tests and everything, which revealed minor allergies that we kind of already knew about, but no anaphylactic reactions.
Still, to this day, he’s had skin prick allergy testing as well, and again, no anaphylactic reactions. So yes, we didn’t get any allergy answers. And also, it turned out he was not a match for the transplant for Seth. So, Seth then moved on to looking at the ATG immunotherapy.
And yes, talking about the impact on the siblings. It was a lot, obviously, for the five-year-old coming over to Melbourne, being stuck in the hospital, and then having to leave us there and come back home with the grandparents. And it was my first time that I actually had been away from him for any significant amount of time, so it was quite hard on him and me.
And then the second sibling. So, my first two, my two older children are from my previous relationship, and so quite a long time before Seth’s diagnosis, my now husband and I had decided that we were going to have a child of our own together. We’d been trying for that for quite some time.
Fast forward to early to mid 2020, and we’re stuck, I say, living in Melbourne with a very unwell child, we were very grateful for the Tasmanian government system and what they have known as the PTAS so the patient travel assistance scheme, when Seth didn’t have to live on the ward anymore, but still had to be very close to the RCH in Melbourne, the Tassie government paid for accommodation for us, which was directly opposite the hospital, so just across the road.
Also, very lucky my husband does what he does for a living. He’s an Australia wide truck driver, and his boss said, look, for as long as you’re stuck in Melbourne, you can just be the Melbourne driver, do that work. So, we’re all living in this little apartment across the road from the hospital.
It came time where we sort of said, even though it doesn’t look like at this stage, you know, we’re a bit concerned we might not be able to have a child of our own, we should probably start being a bit careful, because we don’t know what’s going on with Seth at the moment, it’s honestly just not really the best time, is it?
And so, we had that discussion, literally a week later, Seth got the green light to come home. We flew into Tassie on the first day that Tassie was bringing their first COVID lockdown. We flew in just under that radar. We got home, and I do admit this to everybody, the first place that I went was BWS for a couple of bottles of wine now that I was finally home, but being that we’d been trying for a baby for so long, I’m a very careful person, a sensible person, I thought, I’ll just take yet another pregnancy test. I’ll see that negative test, and then I can, you know, have this one. Um, yes, that was the day that the test was positive. So it was, it was a pretty big day that one.
And, yes, so I guess, in terms of the youngest sibling, by the time he was born, Seth was in a pretty good place. I do admit to people that I feel like we’ve been pretty lucky with Seth, not lucky to be put on this journey in the first place, but certainly very lucky that it just seems like, honestly, Seth’s body has been up for this fight because we have had, I think, the smoothest run that anybody with this diagnosis could have had.
I mean, in going back to talking about the treatments and the medications and the complications and things, Seth, did not see one single side effect from ATG immunotherapy. And we had the nurses warning us well in advance. Look, this is really harsh. This is probably going to happen. This is probably going to happen. He slept through all four doses from the pre-med and Phenergan that was given, and then onto the medications like cyclosporine, which is known to have horrific side effects. I had heard about other children and side effects and complications, again, absolutely nothing like apart from the fact that we do joke, it gave him big, beautiful, bushy eyebrows.
Um, but certainly I hear of a lot of children that get, you know, excessive hair growth on their arms, for example, they get swollen and bleeding gums and things like that. Seth got no complications. So, I just feel like, yes, we were very lucky, and my baby did arrive. Seth was in a pretty good place.
Yes, it wasn’t actually, until Seth had his first blood nose, since pretty much diagnosis, must have been not last year, the year before, and that was sort of the first that our youngest had seen. Seth, randomly, for the first time, a long time, got a blood nose, which turned out to, we don’t know, be nothing, perhaps the heat the doctors were saying, but that was the first that the youngest had seen. And, you know, obviously he had a lot of questions. He wasn’t really sure what was going on at that stage.
Um, but yes, other than that, he hasn’t been through very much with Seth. And then he himself. He’s our second child that’s now still under the care of Melbourne. He’s under the cardiac team. So, when he was quite young, it was picked up that he had a heart murmur. Fast forward through all the appointments and referrals. They found that he has pulmonary stenosis.
They then wanted to do genetic testing to find out the reason that he had that. So, he underwent genetic testing. My husband and I underwent genetic testing, and that actually revealed that my husband was born with a genetic condition that he’s gone his whole life, not even knowing he’s had, and passed on to our son that’s been picked up with him.
So, they actually have what’s called Noonan syndrome, and that is why our son has pulmonary stenosis. They’re both a bit shorter in stature. It’s why they have the stunning blue eyes that they have that I cannot take my child anywhere without people commenting on.
So, yes, between the kids, and if you want to throw in my husband’s condition of ulcerative colitis, which is a chronic bowel condition, there’s a lot of medical appointments and a lot of chemist trips and a lot of everything. But that’s that sort of sums up what the siblings have been through, I think.
Megan Gilmour 1:02:52
Yes, thank you for that, and it just gives people a perspective on, you know, some of that background around the things that happen for families, relocation, you mentioned, granting of accommodation, the whole cost of involved in all of this, somebody’s got to work and yes that travel, that work life situation, and often families being separated. Separated by – in your case, it would have been between Tasmania and Victoria, but fortunately, in that case – your partner could relocate.
But for many families, that’s not an option. So, we also see these kinds of different strains on family life, and not to mention which we’re going to jump into now is school. So, I guess the question here is, do kids with bone marrow failure syndromes currently miss a lot of school, and why? So, who would like to answer that question?
Amy Coote 1:04:14
Mei Ling’s going to jump in for this one.
Mei Ling Yeh 1:04:18
Yes. I think I might. I might start with it yes. So in my patient cohort, most of my patients have missed a significant amount of the school because they are motivated directly from the nature of their illness and the intensity of the treatments, because, for example, I mentioned before, patients tend to have a fatigue, weakness from their own condition as well as the treatments, and increased risk of infection, for example, bleeding issues like Megan just mentioned before, or other physical symptoms.
And also, frequent hospitalisations and frequent medical appointment and immune suppression situations. For example, that when they are during neutropenia stage, we highly recommend them to stay inside, it’s kind of they are living in the bubble situations. So, most of our patients are quite isolated in that sense as well.
And other cases would be from the post-transplant recovery, for example, and patients need to have a certain period of time to stay back home waiting for their immune system to recover, and that’s the time for them to miss out the school.
And also, like what I mentioned before about the cognitive challenges, and this can postpone or make difficulties for them to get back to the school and most of our patients will have anxiety or, you know, depression kind of situation occurring, that avoids them getting back to school.
Amy Coote 1:06:22
Yes, and I think it’s difficult for the schools as well, because, the teachers, the kids don’t necessarily understand. And so, one of the things that Mei Ling does do, it’s more kind of, I guess, bespoke or reactive at the moment, is run training sessions with schools and early year centres on what that diagnosis is. Especially more recently, on some of the more complex, inherited conditions that no one has ever heard of.
But that’s something that we’d like to be able to do more proactively in the future, is sort of the development of an educational program, or, you know, educational collateral that can be delivered to schools or can be taken by the family to the school at that point of diagnosis, so we do improve that understanding.
But one of the fellowships that we offer, which is an allied health and nursing fellowship, recently, one of the amazing women at Royal Children’s Hospital, she has done a bit of a pre and post-transplant evaluation, assessment and framework to really help the student or the child and the family prepare for that transition back to school, prepare for life post treatment.
And we’ve seen some really fantastic family engagement through that research and fantastic results and really trying to help set those children and that family up for success as they navigate life post-transplant and back to school.
Megan Gilmour 1:07:58
Yes, very important, and this is one of the reasons why MissingSchool as an organisation came into being. And I’ve shared a little bit about my story that follows some of what Jess has been saying and talking about, and this is precisely why we started MissingSchool.
It was based on my son’s extraordinary disconnection from school across large periods of time, and Amy talked about hope earlier, and the fact that school connection and connection to peers can provide that hope and also distraction in what is a very challenging time. That’s an understatement for a child, and basically, to have their childhood disrupted.
So, trying to maintain that normality as much as possible via school was one of our goals, and also obviously across, and mainly across the time when they could not attend or cannot attend.
And we’re now seeing across the board that school attendance is an issue, and the fact that we’ve been able to prove that a digital connection to the classroom for these children’s including children in transplant situations or post-transplant as well, across that time, or indeed, at times when they might be at greater risk by being at school, even if they’re not symptomatic.
As to that protective factor, especially in this situation we’re talking about where risk of infection, and when there’s things raging through the school, viruses and other things, we just don’t want to add that into the mix.
So, this journey that that we’re talking about here is precisely why MissingSchool exists. So, it’s another one of those things to celebrate, is how we transform our lived experience into trying to make our communities better, stronger, more informed and absolutely also hopefully find cures. It’s the central reason we’re all here.
So just in a nutshell, what are some of the critical times in the school life of a kid with bone marrow failure syndrome? Jess, you might want to just touch on this one lightly, so our audience can understand these moments in a child’s life at school. What does that look like?
Jess Pearce 1:10:51
Yes, I’ll touch on it, but yes, as you say, just lightly, because going back to what I said before, being very grateful that Seth’s had quite a good run, which he had. So, Seth’s school life for him at the beginning of diagnosis. It worked out quite unfortunate, because it was a year that we had bought our house and we were moving. So, Seth was actually starting at a brand-new school who did not know us, and we did not know them, and that really made it a little bit more scary. But they were great, they were wonderful.
When, when it was time for Seth to sort of rejoin school, I was still quite hesitant. His specialist in Melbourne really encouraged it from the perspective of Seth’s mental health – being very good for him to get back to school.
I was more hesitant because at that point, Seth still had a central line hanging out of his chest, so he was going back to school with, you know, this line going into his chest, where this thing would be sitting right next to his heart. And I had been warned in advance, you know, he really can’t get that bumped, you know, you got to be really careful of that. And here we are sending him back to school, where you’ve got kids running around everywhere and the kids don’t know it’s there, it’s covered up by his clothes, you know? And oh my gosh, the anxiety.
So, yes, there was definitely that. And as you say, anytime there was an illness going around the school, the school had sent out a letter, it’d be like, oh, okay, Seth is going to have a few days at home. And, you know, blood tests in the early days, Seth was still on twice a week blood tests, so that was, time in pathology when he should have been at school. Telehealth appointments with Melbourne, changes for his central line dressing changes and cleanings and things, so much of it, much more, I think, in depth than anyone would really imagine.
But yes, as I say, certainly very grateful that he had no, I guess, extended stays, with the exception of when we went to Melbourne for the treatment, we were there for maybe six weeks. Other than that, yes, Seth’s been at school, I think, a good amount of time for a child that does have a diagnosis as serious as his, yes.
And I guess for me, one of the more recent bigger challenges I faced was he finished primary school last year, so finished grade six, and he was transitioning over to high school, and that meant going on grade six camp. And up until that point, I had not had to put anybody else in charge of my child’s medications. And here he was going away for, I think it was three to four nights down the other end of the state to Hobart, and I was having to hand over his medications to the teachers.
And that was a whole other big thing, because, yes, up until then, that was solely managed by me. So that was another thing to take into consideration. And then we did that again at the start of this year, he started high school, he had grade seven camp. I have mentioned to a couple of people that that was a really unfortunate situation, and that is perhaps something that this can all link into to better educate staff around things like this, because we had an unfortunate situation where he went away for one night to grade seven camp, and nobody gave him his medications.
So that, that was a whole situation. There are a lot of feelings on my part there when my mum and I went into the Principal’s office the next morning for an explanation. So definitely a lot more education that could be done there.
And from my point of view, as a disability support worker, I give medications to people that I support, but I can’t do that without having completed my – it’s called the medication administration training. I have to have that certificate, it has to be current, even if it’s just lapsed, I cannot give people I’m supporting medications.
And it was really quite hard for me to understand that the school were telling me that on camp, it was the assigned First Aider who was in charge of medications, and the only training this person has done is first aid training. They have not actually done medication training. They’ve done first aid training and then been put in charge of medicating all of these children on camp. No wonder there was a mistake!
Megan Gilmour 1:14:58
Right? Yes. Thank you so much for being open and honest about all of that and how difficult it is. I’ll start first with the fact that you’ve named a whole range of critical times there. So, transitions. You talked about transitions in and out of clinical settings and back to school and home, and you talked about that transition between school years, and you talked about the transition between being on a camp and not, being at home or at school. So, I think that’s those are really important to observe. And we hear this a lot through our conversations.
The other thing that you’ve said that I feel is really important for this conversation and to capture in our data is the specificity around that medication issue. So, what we’re seeing there is, that certain roles in our community have certain obligations, registrations, and those have to be maintained.
And then what we’re seeing is that isn’t being extended into a school setting where people are needing to give children medications and that’s, I think, that this is a fact now there’s many different conditions in a classroom, and I think it is one of the big issues that we’ve raised with government, too, is about this nationally consistent approach to things exactly like this, and that perhaps it shouldn’t be on teachers to do it as well, so that we can kind of separate teachers being teachers, from that other type of care that might need to be given in schools.
But it just does point out to us, I guess, the way that schools themselves are under-prepared, and that we don’t have this sort of national approach to what is a growing number of children with chronic conditions in schools. And, yes, I’m always shocked by these specific examples. They always come up.
And the other thing I might add to that is school, as a child’s place of work, and all the things that take place in a school, it’s not just about maths and English. It’s about play. It’s about being able to go on excursions. It’s about, you know, the whole school experience as well. And that’s really what we’re here to do, is to – and part of the reason for these conversations – is to draw out these things, to say how they could work better.
There’s just so much – we can do so much better in our schools by preparing schools to operate in this way so that it’s just not random. So, thanks for giving that example. And I can only imagine how agonising it was to hear that about those medications.
Mei Ling Yeh 1:18:06
Excuse me,
Megan Gilmour 1:18:07
Yes, Mei Ling?
Mei Ling Yeh 1:18:09
Sorry, yes, just on the line of critical time in the kid’s with the bone marrow failures in syndrome space, another stage I would like to point out, which is when the patient is on the bone marrow transplant phase, when, most of our patients can be admitted to hospital from 30 to 100 days, depending on the severity of the treatment and conditions, and because of the intense chemotherapy, making kids extremely well and necessary to be hospitalised, of course, and is itself kind of prolongs this period of time, and that’s another critical period of the school absence as well.
Megan Gilmour 1:18:59
Yes, it certainly is. My son had a bone marrow transplant, and then he didn’t recover after a whole year following – his cell lines didn’t return for a whole year after that transplant. So, it was very, very tricky,
Mei Ling Yeh 1:19:14
I’m sorry
Megan Gilmour 1:19:15
Yes, he’s a very healthy 25-year-old young man now. But it was a very, very challenging and agonising period. And we know, we just know what a bone marrow transplant is without going into detail of that, Mei Ling is absolutely right. It’s that critical time away from school.
And also, Mei Ling touched on this earlier as well, is the potential ongoing effects that that student might have from large doses of chemotherapy, and all of the other drug loads that they might have had or might be continuing to have when they’re back at school. And the trauma, the medical trauma that goes with it.
So, I think they’re really – in terms of school life challenges – what we’ve just talked about there – are some of the biggest challenges and vulnerabilities that children with bone marrow failure syndromes might face.
And I suppose as we come to wrap up this conversation, is there anything that you’d like to share with us about how you think schools could better address these challenges and vulnerabilities? Is enough happening right now and what do we need people to know about, about what should be happening at school, or what we would like to see happening in a perfect world, or even a better world? We’ll go for perfect after that. But yes, we’d love to hear from you on that.
Jess Pearce 1:20:51
I’m sorry, ladies, just in terms of wrapping up, I had allowed an hour and a half, but my 10-year-old has to be somewhere in 20 minutes, and I’m running severely late.
Megan Gilmour 1:20:59
Thank you. Jess,
Amy Coote 1:20:59
Thanks so much. Jess,
Jess Pearce 1:21:00
No worries. Thanks guys. Thanks. Bye.
Amy Coote 1:21:05
Bye,
Megan Gilmour 1:21:06
So, thinking about all the challenges and vulnerabilities facing kids with bone marrow failure syndromes, and what’s happening now at school to address those challenges and vulnerabilities. Are we doing enough? What would we like to see in a better world at school for children with bone marrow failure syndromes?
Amy Coote 1:21:27
I think Megan, you did touch on this a little bit before when you said is it the teacher’s responsibility? You know, where does that responsibility lie for schools that are often very stretched, under resourced, struggling to fill critical roles as educators, and then you’ve got organisations like Maddie’s Vision, like MissingSchool, like, we’re trying to fill the gap somehow.
And as I shared earlier, look, we absolutely have aspirations to create more educational collateral and information that families can take with them to schools. It’s on the wish list, but I will share that in the recent federal election, we were successful in a bipartisan commitment of $3 million to Maddie’s Vision over the next three years, which is supporting a number of initiatives, from research support services, but also educational outreach, and that educational outreach is both in, hopefully, a clinical and a school setting.
So, we absolutely feel a responsibility to play a role, but I think we need to continue our advocacy efforts and working with organisations like yours, with Rare Voices Australia and those that continue to speak for patients and families battling rare conditions, and how we can continue to improve support in a number of different settings for those families.
Megan Gilmour 1:22:56
Yes, that’s amazing. So great that you have received some funding there to do these things.
Amy Coote 1:23:01
It was a lot of work.
Megan Gilmour 1:23:03
Yes, I know I can only imagine, but you’re up for it. Yes, part of our goal in having these conversations and an ongoing relationship with organisations like yours is to try to bring some nationally consistent approach to how schools deal with chronic conditions, and we can include in that critical conditions and rare conditions, just so that at an absolute baseline, there are things that schools just do, and then the specificity, the specifics are then to do with that particular student’s condition and what that requires.
So, you know, there’s a baseline of things that just happen in schools and the way that schools do things. And then, you know, we get that nuance around a specific child’s, you know, what they need in school, in terms of their health plan and in terms of their Individual Learning Plan, which every student you engage with, should have, is an Individual Learning Plan.
And it’s worth mentioning, as I always do on these calls, that the Disability Standards for Education covers students with bone marrow failure syndrome, and that enables a whole range of things to happen, increased funding to that student for access to their classroom, connection to their curriculum, learning alongside peers, additional supports, assistive technologies, including what, as we say, two way digital connection to the classroom – we treat that as an as an assistive technology to maintain school connection.
And so, we’ve already got a great foundation in our systems to work on, we just want to see that be more consistent. And I would hope in the future that maybe a teacher doesn’t even need to know the name of a child’s diagnosis. They simply know what they need to do, when and how – what the school needs to do, right? So, we do know that children in their teenage years don’t want people to know. And then we get into health privacy issues there as well. So, this is a little bit of complexity.
But our point of view is that a teacher’s deep knowledge of bone marrow failure syndromes, is not going to help them teach that student. They won’t be able to hold all of that information or even understand it indeed, but if we can make those plans better and clearer and have ways for them to interact and engage with that student and understand what adjustments they need to keep them safe and also to help them thrive, That’s the goal that we want to work for.
Amy Coote 1:26:13
Absolutely,
Megan Gilmour 1:26:14
yes, yes.
Mei Ling Yeh 1:26:15
Thank you so much, Megan for touching on that’s so important, and that’s exactly what we are trying to promote and stress on as well. Every time we focus on good communication between parents and the school, of course, and also hoping that the individual education plan will be in place. And from my experiences, it hasn’t been happening at all.
Another thing I would like to point it out is the emergency care plan based on our patients’ condition; we do need to have that care plan in place as well. So those are the things we are focusing on. And every time, when I deliver in the education, when I talk to the school, I always focus on those three sectors. We just need to make it happen.
Megan Gilmour 1:27:07
Yes, absolutely, and, and they’re the kinds of things that I hope will become nationally consistent, as in that they happen, and then what’s in them is specific to the student, if that makes sense, as an example. So, thanks for giving that some more attention, that question.
So, as we wrap up, I’ll ask each of you, what is your call to action for bone marrow failure syndromes in seven words or less, what would you like to just throw in there as a call to action?
Amy Coote 1:27:39
I think it’s difficult, Megan, when bone marrow failure syndromes take up four of those seven words.
Megan Gilmour 1:27:47
[laughter] so for ‘this issue’?
Amy Coote 1:27:50
Look honestly. You know, we ran an inaugural National Bone Marrow Failure Syndrome Awareness Week earlier this year to align with our 10th year, and what we asked of the Australian community was to raise their voice and save lives and join us in the fight against bone marrow failure syndromes.
We need every Australian to know about these conditions, to be prepared to support their families, their networks, their friends, peers, whatever it is, and to help us continue to advocate for the needs of patients and families into the future.
Megan Gilmour 1:28:25
Yes, brilliant call to action. What about you, Mei Ling?
Mei Ling Yeh 1:28:28
It’s so hard, like what Amy just mentioned, and very similar to her, I think I would make it as a understand, support, include, educate, empower, fund and act. That would be my seven words toward this.
Megan Gilmour 1:28:52
So amazing, all of you, incredible women, and that brings us to the end of our conversation, which has been an in-depth and long conversation, which I really valued, and hearing about all your amazing work and supportive families and your passion for change, and not just passion, but actually pushing the pedal on, passion to action, and seeing the results and outcomes of that and hearing about it today is just really something we want to celebrate.
So, as well as a big shout out to each of you, Amy, Mei Ling and Jess for joining us, we want to shout out to Maddie Riewoldt’s Vision and you can find information, resources, connections over at mrv.org.au [https://www.mrv.org.au]. Head there, give generously and get involved if you want to, if you wish to, if you can, and get behind this great organisation. Thank you so much for joining us today on Live & Learn.
Amy Coote 1:29:55
Thanks so much for having us. Megan,
Megan Gilmour 1:30:00
Thanks everyone for tuning in. Help us turn up the volume so all kids are seen and heard. Follow along, like share comment or leave us a review, because we love hearing from you. And if you want to donate, head to MissingSchool.org.au, because every dollar makes a difference.
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