RECORDED Fri 13 Jun 2025
SUMMARY KEYWORDS: thalassaemia, blood transfusions, school connection, mental health, invisible disability, genetic testing, iron overload, blood donations, awareness, resilience, family planning, treatment plan, school experiences, chronic conditions, advocacy.
SPEAKERS: Ella Luong, Megan Gilmour
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.
Meet Ella Luong. Ella is a Brisbane-based mum of two energetic boys aged 10 and five, balancing family life with her role as the CFO of a small dealership. Ella brings dedication and heart to everything she does. Ella has spent over 20 years volunteering for various organisations such as Ardoch Youth Foundation and Queensland Children’s Hospital Foundation, and more currently as the Vice President of her son’s school Parent and Citizens Association.
Her husband Frank works in engineering, and together, they navigate the challenges and triumphs of raising two children who both live with thalassaemia, an inherited blood condition. She is passionate about community resilience and building supportive networks for families facing similar journeys. Welcome Ella. We’re so excited to have you on Live & Learn.
Ella Luong 01:50
Thank you. I’m very excited to be here.
Megan Gilmour 01:54
Wonderful. So today we are here to talk about supporting school connections for students with complex medical and mental health conditions. Let’s head to the first question.
Ella, tell us how thalassaemia and sickle cell anemia impacts kids and why it’s something every Australian needs to know and care about.
Ella Luong 02:18
Today, I’m going to try to try to focus on thalassaemia, because thalassaemia and sickle cell are two different blood disorders. I’m focusing on thalassaemia because both of my boys have thalassaemia, and I guess thalassaemia is not well known. It’s not known by society. There’s not an in-depth knowledge about what thalassaemia actually is.
To me, thalassaemia is a blood condition that affects the hemoglobin in the body and the making of that protein. When I was younger, the way that the GP described it is that you’ve got a red blood cell like a P shape. Well, mine’s not a kind of like a P shape, it’s more kind of like a rounded shape, and so that red blood cell carries oxygen throughout the body.
So, thalassaemia can have different severities, ranging from being a carrier to having thalassaemia major, which means that your body doesn’t create those red blood cells to carry oxygen throughout the body, so that blood transfusions are then required to restore the red blood cells in your body.
Megan Gilmour 03:40
And why is it something every Australian needs to know and care about?
Ella Luong 03:44
Because I feel that even in Australia, the diversity of people is changing. It’s become very, very multicultural, and thalassaemia is sort of well known, it’s more common in Mediterranean, in eastern countries, South Asia and Southeast Asia heritage, and we are finding more and more people in that sort of background are living in Australia.
So, from a family planning perspective, some of these people who do have thalassaemia are actually unaware that they have this genetic disorder, so they could be passing down to the next generation and not having an understanding of how that actually impacts on a life.
Because having thalassaemia is a lifelong journey. It’s not something that could just be cured, so at this stage anyway, so the impacts it has on families and people thinking about having families can be significant because it’s about those hospital visits and then a lifelong journey of monitoring, seeing specialists, and the impacts of growing up.
Megan Gilmour 04:59
Yes, yes, Thank you so much. Now, many people probably assume things about thalassaemia, that’s if they know about it. What’s the million-dollar question you get from parents or loved ones when a child experiences or is diagnosed with thalassaemia – knowing what you know?
Ella Luong 05:20
I think the ultimate question would be, will my child live a normal life? Because not knowing enough, because when I first found out that my child had thalassaemia, it’s that constant Googling, trying to find out what are the impacts and what do I need to prepare myself in the future?
So, I guess the question that every parent would want to know is, is my child going to live a long life? Are they going to go to school? Are they going to have relationships? Are they, can they get married? Are they going to have kids? Yes, so I think that would be on the forefront of every parent’s mind.
Megan Gilmour 05:55
And then what’s the most important thing that you want them to know?
Ella Luong 06:00
From my experience, I would like them to know that, yes, they can live a normal life, they can go to school, they can have relationships, they can get married, they can have kids. And I’m reaching out to the people who actually do have thalassaemia and have started a family, have started having kids, and what are the options available for them for treatment. So, I want to let these parents know that they’re not alone and that there are people that are already living their lives with this condition.
Megan Gilmour 06:31
Thank you. It’s so interesting for me doing these webcast interviews and these conversations, and I have to say that across so many different conditions, those are the answers that come up the most.
So, it just shows us as well, even across conditions at a human level, these are the things that worry us, and these are the things we want reassurance about. So, thank you so much.
You’ve given us a little bit of insight into this already, but we’d love to know if you’re willing to share what brought you into the world of thalassaemia.
Ella Luong 07:13
So, I always knew that I was a carrier of thalassaemia. I was always really tired, really lethargic. And, going through school was a bit hard, and going through puberty also made it very hard with this blood condition.
So I knew that when I needed to start a family, I needed to make sure that I didn’t understand the full impact of family planning and the cost of genetic testing is very high, so I guess that’s how I come to where I am now, having two kids with the condition, and not sort of knowing at first with the first child how to handle the situation, because we weren’t even aware that he had thalassaemia, and we didn’t even know what thalassaemia intermediate or major looks like.
I just in my mind, I thought thalassaemia would be someone like me who was just always tired, low in iron, and that was my misconception of the whole disorder and then having a child now that it has that is transfusion dependent, so he requires blood transfusion every three to four weeks, I understand now the full impacts, well, not the full impacts, but more so the impacts that it has on a life of someone who has thalassaemia.
Megan Gilmour 08:38
So, thank you, without going into the genetics of it, because I’m sure that’s complex and we’re here to get into the nitty gritty of the kids and school and so on. But thank you for sharing with us that difference between being a carrier and being someone who actually has it.
And I think that maybe I’m not using the right terminology there, but I heard you say major. So, there’s someone who’s a carrier in this and then others have thalassaemia major, which means they become blood transfusion dependent. Is that correct?
Ella Luong 09:14
Yes. So, thalassaemia can be a carrier, minor, intermediate or major, so, and you might even meet two people who are thalassaemia intermediates, but their symptoms and their treatment plan is completely different.
So, each person is very different, depending on the scale where they sit, and the treatment plans can be very different as well. I’ve got two boys who are thalassaemia, intermediate and major, and their treatment plan is very different, so both carrying the same thalassaemia, but different scales on where they sit in that intermediate major.
Megan Gilmour 09:54
Yes, having lived on the ward of Sydney Children’s Hospital hematology and oncology ward, we did come across kids having their transfusions for thalassaemia, and I honestly didn’t know that, that what you’ve just described there. I didn’t realise that, so thank you for clarifying that, just for me alone.
So, knowing all that you know, Ella, what’s your biggest hope for kids with thalassaemia, their families and loved ones when navigating this?
Ella Luong 10:30
I think it’s like sharing the knowledge, the experiences and the awareness through school, through their life growing up. The biggest challenge, I guess, that I went through, is trying to help my eldest son, which sometimes I do have a soft spot for him, because he had to go through a lot of bad for us to understand how to help our second child go through his life, through schooling.
During school, it’s because the condition is not well known and there’s not much or too much awareness and depending on the school and how many facilitators they have, I felt unless I advocated for my child to be able to go to school and attend school and not missing out on school.
So, there’s a lot of things that me and my family and my husband have implemented to ensure that they could and can live a normal life. Things like not missing out on camp. This year is going to be the first time my son, who’s 10, is going to camp, it’s a year four camp. And so, I knew almost a year in advance that in August he’s going to go on camp. So, six months before, in January this year, we’ve already started planning his treatment plan so that he doesn’t miss out on camp.
Megan Gilmour 12:01
I love it, so important, just so important
Ella Luong 12:04
Yes, specific experiences are something that we can’t take away from them. Missing out on school is already enough for them to have that disconnect with building friendships. So, we want them to have these experience so, I’ve been able to try and plan everything around them, but sometimes things don’t go to plan. They may miss out on an excursion or sports day. You know, next week my kids have their Junior Sports Day. It’s the first time Liam’s going to have his junior athletics, but he’s going to miss out because he’s got his treatment on that same day.
So, it’s all about trying to pre plan so they don’t miss out on those opportunities, really engaging with the school, working with the school, and the school principal to have resources to be able to help them catch up in school.
We also do external tutoring as well, and the kids go to school at the children’s hospital when they’ve got treatment. So forward planning these things can help the children feel less displaced.
Megan Gilmour 13:08
Yes, that’s amazing, and I will get into that a little bit further as well as we move down and deeper into the school conversation. But yes, planning is really big. You know, in lights, there, neon lights, its key to so much of this, especially the coordination between clinic and life and school. And just as you say, that sometimes can take place 6-12, months before, just so that you can be thinking about it.
What are some of the common and perhaps frustrating public misconceptions about your boys or their condition, thalassaemia? And how have you seen this impact families?
Ella Luong 13:52
So, I think because people don’t know, or not many are aware of what thalassaemia is, they, I feel that, from my experience, it’s more okay, so, these kids have a condition, but thalassaemia is very different from other conditions where it’s very visible.
Thalassemia – I call it an invisible disability, because you, if you look at them, you cannot tell that they’ve got any condition. So, if I think with Lucas, he was in a pram, because he didn’t want to be in a wheelchair, but he was in a pram for until he was, like, six, seven years old, and that’s because he couldn’t walk.
So, people, the public, would think ‘Why is a seven-year-old sitting in a pram? That doesn’t make sense’. So, it’s the lack of understanding. And then do I bring him out, or does he just stay at home? So, these are the decisions that I made as a parent. Well, we want to go out. We don’t want him to miss out.
But having those conversations is really empowering for me, to start those conversations as well. Because when parents give you those looks, it’s like, ‘Oh, okay’ then we can start a conversation. Because, and that’s what I mean by this invisible condition, is that, unless we have those conversations, people will just think they won’t know what’s going on.
Megan Gilmour 15:25
Yes, thank you for that, too. And it’s a really interesting one. When the kids are sort of older too and making their own decisions, or even at a young age, as you’ve explained that our choice around how they want to be perceived as well is so central to this whole conversation, and how we deal with it.
How many Australian children and youth are living with thalassaemia right now?
Ella Luong 15:55
I’m not really sure the statistics around that, but I know through, having been part of the TASCA organisation, there is some research done. And from memory, couple of years ago, there would be about anywhere between 2000 to 2500 but once again, the thalassaemia in each of these children can vary significantly between children to children. So yes, couldn’t tell you exactly what the numbers are.
Megan Gilmour 16:29
We’ll have a look for it and put it in the show notes, if we can find anything ourselves, and just drop that in noting that prevalence is not necessarily the same answer, true prevalence is not necessarily the same answer as how many are known?
As you said earlier, there could be, if we’re talking about a carrier or thalassaemia, versus these other range of presentations, then there’s going to be significant differences in that number.
Is there a risk of delayed diagnosis, or are most cases of thalassaemia picked up easily?
Ella Luong 17:15
No, definitely, because we didn’t know that our child had thalassaemia until he was roughly about two or three, because they require specific testing for it. So, unless you actually ask for that testing, there’s no general testing for thalassaemia.
So, unless you’ve gone through all the different types of things you go through with your GP, and then you ask for a thalassaemia test, you’re not going to be able to get that answer. But I do feel that in most cases, children who do have like severe thalassaemia, the symptoms would show after 12 months.
So, I do believe there is a risk of delay. But for those that are in the major category, they would be picked up because their symptoms would be quite severe.
Megan Gilmour 18:10
What kind of symptoms are there?
Ella Luong 18:13
Just the bone deformations. So, because you don’t have the blood that goes around the body, and then the blood gets drawn from the bones. So, you start having subtle bone deformation, you become very, extremely anemic and very fatigued, very tired, to the point that you can’t walk.
That’s how we found out about Lucas, he was having naps, like three-to-four-hour naps. And that’s not that, not considered normal. So, the symptoms become very, very obvious as they get older.
Megan Gilmour 18:53
Yes. Is that a low blood red cell count?
Ella Luong 18:56
Yes,
Megan Gilmour 18:58
So, as you said, the red blood cells carry oxygen around the body. I mean there’s probably more complicated answers than that, but we need a certain number to be circulating and that’s why you’re talking about blood transfusions there as well, because we need to replace that if it’s not there, right,
Ella Luong 19:21
That’s right, yes.
Megan Gilmour 19:24
So, what kind of complications do kids with thalassaemia face? I mean, some of those symptoms themselves present complications. Can you share other things that you know about?
Ella Luong 19:37
Yes, so, a lot of complication comes with the treatment plan. So, not having enough red blood cells requiring blood transfusions, but then having too much blood transfusion can also create what’s called an iron overload. Our body doesn’t just extract iron out of the body; the body tends to retain it.
So, when we’re having lots of different people’s blood into our bodies, the iron gets stored up and unable to be, I guess, released back out from the body.
So having an iron overload can have really severe impacts on your body organs, like your heart, your kidneys. So, then the treatment to be able to, I think, at the moment, the most non-invasive treatment for iron overload is medication.
Megan Gilmour 20:31
Chemical ketosis is it, or what’s that called?
Ella Luong 20:36
Jadenu is what the kids currently take, and it’s an iron chelation medication to help remove the iron out of the body.
Now, one of the complications with that is that some kids may have a reaction to the iron chelation medication. An example of that would be my eldest son. He did have a reaction which put him into an induced coma.
We were able to get him out of that coma. But then as a parent making that decision in continuing that medication, knowing that he may have another reaction in the future, is a very tough decision.
Megan Gilmour 21:27
Very tough. Yes, my son lost complete hearing in his right ear through that drug.
Ella Luong 21:35
Sorry to hear that.
Megan Gilmour 21:36
Yes, so it is a tough call, for sure, but the point that you’re making here is, if I’m correct, is that it needs to be dealt with. It cannot not be dealt with. That iron overload has to be addressed.
Ella Luong 21:52
Because you’ve either got the iron overload that’s going to impact your heart, your kidneys, or you potentially have this reaction.
Megan Gilmour 22:03
Yes, unsustainable. It’s a hard one.
Ella Luong 22:07
We’ve got to make a choice, yes,
Megan Gilmour 22:08
Yes. And there are other means to reduce the iron. As you said, some of those are very invasive and can take a lot of time for kids as well. So on top of the transfusions, which, I’d love people to understand that a blood transfusion takes hours, and just the end to end and the preparation and being at the hospital or clinic to set it up, it’s not necessarily a short timeframe to have to do that all the time, it’s quite a large effort, you know, in a child’s life.
Ella Luong 22:48
Yep. And a perfect example would be having these blood transfusions requires a cannula to be placed in a blood vein. Now, when Lucas was younger, there were times, every month, that one day that we spent at the hospital – because it does take that full eight hours to be there – it’s like knowing that something’s bad, but still having to face that bad.
There were times where they tried to put a cannula into Lucas’s vein six times but they could not draw blood. And so, the trauma it has for that child is something we couldn’t ever had have imagined.
Megan Gilmour 23:33
I know it personally, yes, I’ve seen it personally, to watch a child go through that, and the needle phobia that they develop because of that as well, and the anticipation of it and it is traumatic.
I think this is what we really need people to understand, and as we get on in the conversation why it’s important to have positive things in their life, and to make sure that there’s positive things that you know exceed that burden.
It’s almost like trying to reduce that burden on them by putting lots of good stuff into their life as well but not just being seen as the person who has the cannulas or the person who has to take the medication to actually have their identity as children is so important as well.
So, I think that’s so important for everyone listening to know about thalassaemia and blood transfusions or infusions and the clinical toll that can take on kids and families is such an important thing to know and understand.
So, we’re heading to school. Do you have any idea what the current population of school children with thalassaemia would be today, and or if you don’t know, do you know if the data is tracked for example?
Ella Luong 25:04
I, yes, I don’t know if the data is tracked. I raised this with my son’s schools, and you know from their response, I don’t feel like they’re actually aware. And that’s what I said earlier in the discussion, is that I really try to advocate for my kids and explain the condition, so that teachers are aware.
The first couple of years, I was still trying to navigate through this whole parenting and parenting a child with thalassaemia. So, I wasn’t so involved with the school, because we missed so much of school, but now that, as they are getting older and spend more time at school, I need to continue speaking to school and let the school know that this is the condition that they have.
These are the symptoms that they have. This is the time that they’ll be missing out on school and letting the teachers know why my son would miss out on PE for two weeks of the month.
And then, you know, before it didn’t matter so much of him getting a non-satisfactory mark, because being in prep, being in year one I didn’t think for me as a parent it was very crucial, because it’s about getting his treatment plan in place.
But as the kids get older, I think, as you mentioned earlier, they have their own sense of identity. They don’t want friends saying, ‘Oh, why are you always not here when we have PE – did you pass your PE?’ like those sorts of pressures as well during school can be quite harsh and demanding.
So, and that’s why I feel the schools, not just with thalassaemia, but potential other conditions, need to have more awareness around this data and how it actually impacts the student throughout school life.
Megan Gilmour 27:07
Yes, I’m actually having this brainwave right now, Ella, so I’m going to share it. It’s a bit left field and odd, but I’ve listened to so many of these conversations, and I love that I always see something I just didn’t see before, after even working and living this journey for so long now.
But to get a not satisfactory on, let’s call it your physical ed class when you’re heading off to clinic to have your life-saving treatment at that time, wouldn’t it be better if schools knew that treatment of a medical condition to save a person’s life or treatment to keep them living a good life, or those types of things, actually can be classified at school as a pass on your physical ed, on your physical health.
Can we not give that to these kids? Because what they’re engaging in is equivalent to a marathon that day, really. You know, I’d just love to see that shift of perspective in schools with so many kids now experiencing chronic conditions, that if those slots are being used for not just wellbeing, but actually treatment, can’t we grade them in a different way?
Can’t there be some way to make that not seem as if you’ve failed at school. Anyway, I won’t go further into that, but I put it there for the team to pick up as well, because I think it’s something that we could talk about in our policy conversations.
So, I think you’ve answered this. But for the record, do kids with thalassaemia currently miss a lot of school?
Ella Luong 29:11
Yes, so they do miss quite a bit school, especially if they have to go in for surgery, because it’s not your normal day surgery. There’s a lot of prepping that needs to be involved. And when there are sicknesses, such as lots of flu and that going around, because their immune system is compromised, we then need to keep them at home.
So, there’s a lot of decisions that need to be made and to kind of keep them safe, but at the same time, I want to help them build up their own immunity as well. So, to answer your question, yes, they do miss out on a lot of school, but as a parent, I need to work very hard to make sure that they still get the experiences that they are entitled to.
Megan Gilmour 30:03
Yes indeed, and also, as Ella was sharing before, that full day once a month, in some cases, for kids with thalassaemia, just for their regular tune up with blood, that’s ongoing right across the whole school life.
Ella Luong 30:22
That’s correct, yes,
Megan Gilmour 30:23
That’s one day, at least one day, at least per month for your whole school life that you’re having essential, required treatment. And then, as you said, there might be other times outside of that, and why school connection is so important.
Ella Luong 30:48
Yes, because if they get really sick, or they get a major illness, it may be more than once a month. It may be twice a month, actually during puberty and growing as well, they need more bloods as well. And then if there’s a shortage of blood and they can’t get their blood, we’ve got to spend another day there. So, it’s that constant of unknown. But yes, how do we kind of like, help them through that?
Megan Gilmour 31:14
You know, yes, and plug for any blood donors out there, or anyone thinking about it, it is actually – we’re hearing right here now how critical that choice is that people make in their lunch break or whatever, just to go and give blood. Because it’s just so lifesaving. I know that from my personal journey with my son as well.
Ella, you shared, you know you’ve mentioned some critical times in the school life of a kid with thalassaemia. Do you want to add any other times that we should be thinking about as well in their school life?
Ella Luong 31:57
I think in the school life when they’re transitioning between grade levels, and also through puberty as well. Puberty, I feel, is a critical moment for all these kids, because puberty is not just about, you know, growing a moustache or – it’s a type of mental growth and also body growth and more so the body growth requires blood.
So, they’re the critical times that I feel that the children will need throughout school to help them focus, to help them study, exams, those are very important milestones through the school life that children will need to get through.
And it’s really hard enough for what we classify as normal kids to go through. And then on top of that, you bring in another condition. It just compounds the effort and the resilience to get through that.
Megan Gilmour 32:57
Yes, indeed. I wanted to also ask, and this doesn’t have to be about your own boys, but just generally, young people with thalassaemia experience mental health issues as well as their – or do they experience mental health issues as well as their physical condition?
Ella Luong 33:21
I do believe and it’s not just for the patients, as parents, I think it’s a really big mental toll as well, because the kids, when they when they’re having transfusion as babies and when they’re younger, the traumatic experience is not forgotten, but they may not in the forefront remember it, but as parents, those memories will be there forever. So, the, I guess the mental toll for the parents and the kids can be very severe.
Megan Gilmour 33:57
It absolutely is Ella. I’m with you right there. I’m really with you. I know the journey, and I know how you know it’s not something you ever get over. Hopefully you learn to carry it more lightly, but it is always there.
And I think that particularly in cases where, well, one question I didn’t ask but was to do with peers and siblings. But of course, in your family, the siblings experience is also one of a young person with a chronic condition.
So, you’ve got all of you in it together – would be, and is always for families in these circumstances, such a central part of their life. But in your case, it is, that is the central part. That’s why everything works around it.
Ella Luong 34:53
And that’s why sometimes I thought maybe it was a blessing in disguise, because, you know, the mental load it does have for the kids as well.
My youngest one is like, ‘So does everybody have a port where they have infusions?’ Because that’s all in his life that he knows. And starting school and going swimming, where you’ve got to learn to get changed, and people seeing your port as well.
A port is an internal device that’s placed just above your shoulders where they can instead of putting cannulas in through your veins, it’s a much easier process and a much less daunting process to access the blood transfusions. So, in his mind, for a five-year-old, ‘Oh, everybody has one of these’.
Megan Gilmour 35:40
Yes, that’s all he knows.
Ella Luong 35:43
For him, he feels like, ‘well, I’m not sick, why am I at the hospital? Are all kids doing this?’
For my older kid, who almost died twice because of this condition, he’s got to go through therapy to understand what are these things that he’s fearing. The trauma that he’s gone through. He couldn’t sleep in a dark room because he said he was, he couldn’t see for a very long time, and that’s because he was in a coma.
But he could still, and I’m not sure if it is just a memory or a dream, but he couldn’t open his eyes, but he was there, and he could hear everybody. He sees lights. And there’s a lot of things that he fears, because a lot of these, and that continual counseling that’s required for him at school, and then, going to camp, I’m not going to be there. When you have these fears, like, how are these going to like…that’s a mental toll on me.
Megan Gilmour 36:45
Yes, and I’m sure you’re preparing him for it. My son’s now 25 and for the longest time was getting fit, and he came out of his condition, and then at a big life transition, the anxiety, just rage, just came out, out of seemingly nowhere. But of course, we know where it came from. It’s the older person processing as well.
So, I think these kids, as people, at different life stages, as you said, the transitions, they see it as a more mature person as well, right? At each level of development, they’re looking at it through almost new eyes as well.
And the really critical thing, and why we here at MissingSchool, we care about school so much, and we’re fighting so hard to have these kids maintain connection through two way, digital connection to their school when they’re not there a) because it’s possible, it’s the 21st Century, and b) because it’s a way to mitigate trauma, isolation and that anxiety of coming in and out of school all the time, being away and then coming back, all the time.
And just to take one more thing off their plate as they’re processing their treatment, their dreams, their visions, their desires for themselves, the fun things they want to do, and right alongside that, the trauma. Because I think all of these things go on simultaneously, don’t they. It’s not like we can compartmentalise things in our life.
So that’s why we see this conversation about school as vital, and it should be so central to our school systems, when we hear not just your story, but all of the stories of kids with different conditions and just what they are going through.
And it always interests me talking about kids’ resilience. And it’s like, while everybody’s talking about kids being resilient, just think about what some kids go through, including yours. It’s like they’re not talking about it or doing a project on resilience.
You know, they’re getting up every day and doing what adults expect of them, because it’s not something they chose, is it? You know, it’s like, well, now we’re off to the hospital, but why? Why do we have to go again? But yes, so just a big shout out to the kids out there, and the families as well.
Just on the point of resilience, we don’t need to be resilient unless we’re under a lot of pressure. And as we’re doing that, we’re actually getting through it because we’re still going through it. You know what I mean? That is the active example of resilience, in my opinion.
What should families and schools be prepared for then, at different times, from your point of view. Knowing these biggest challenges and vulnerabilities that you’ve shared, like what stands out for you in terms of what schools, teachers, school leaders, even government, should really know about?
Ella Luong 40:33
Just for me, I feel it’s the awareness, because if they don’t have that awareness, they’re not going to be prepared for it. So, it’s the awareness and knowing that these are the impacts that kids with thalassaemia may have during their school life can help them be better prepared and through the different transitional stages, knowing that this is their symptoms, and this is how they can react. They will take a little bit longer to get there, but the time is just what they’re asking for as students, as parents.
But without that awareness, a lot of parents, and some parents may not be as outspoken to be able to advocate for their kids, so they kind of get left behind, I feel. And then some parents like me, who are able to do that may have, some may have a better process in place, but that shouldn’t be, that’s not fair.
Every child should have the same level of support, whether their parents are able to advocate for them or not, but without the understanding or the awareness, teachers are kind of flying blind. So, I do believe, yes, the awareness is the key thing.
I know there’s a lot of government subsidies for people with the more, sort of disabilities and so forth. But as I mentioned before, thalassaemia is more like an invisible disorder. So, it’s kind of like, sometimes it’s left behind because they are not seen as to have a very visual impact.
But as we mentioned before, the mental impacts that they have, and the missing of school that they have, and the trauma they go through, physically through hospital treatments, that awareness I don’t believe is there.
Megan Gilmour 42:41
We’ve been really conscious of this for the longest time, and obviously doing our own advocacy, but it’s exactly why we’re doing and having these conversations and recording them, because we need to get the stories out, and we need to get the understanding of many, many, many conditions to actually not only showcase what those particular kids go through, but to also showcase across the board, the similarities of what people go through in the school journey, and how we could make it better, easier and clearer for schools and teachers, and then better and easier for families and kids as well, so that really, the burden is reduced for everybody involved as well. So that’s why we’re so grateful to have these conversations.
Ella Luong 43:40
Because I do feel that it’s not like the child wants to miss out on PE, it’s not like he doesn’t want to go to school. It’s not like he can’t answer those questions. It’s because he is physically or mentally drained, and sometimes they can’t do that, but without that awareness we don’t want teachers to think, ‘Oh, he’s just slack’, or ‘he’s not pulling his weight’. And if you want to achieve big things, you’ve got to put in that effort. But that child is putting in a lot of effort, but that is not – that may not be seen.
Megan Gilmour 44:16
Yes, and not recognised. And as you said several times, it is an invisible illness, which adds another layer of complexity to it. And so I guess certain assumptions at school might be without an understanding of the impact and the toll that’s going on personally and privately to manage the conditions and to stay well, could actually lead to the wrong assumptions being made about a young person at school, and that’s something that we really need to address, without breaching at the point at which a student, a young person, doesn’t want their condition known, which is also completely up to them. Really, if it’s privacy that they want around that.
And one of the things that we’ve been thinking about is the way that a nationally consistent approach across Australia to children with health conditions, and why we’ve asked the Minister for these children with health conditions to be established as a priority equity cohort, is to get that nationally consistent approach.
Hopefully we can come to a point in time where the condition itself doesn’t even need to be named, and the medical aspects of that don’t need to be shared with the school, but we simply need the best kind of individual learning plans through the Disability Standards for Education and the adjustments put in place and made through that which is a requirement or regulation that applies to every single school in Australia.
So, and that would also include an accompanying health and safety plan as well, and it just says the things that need to be done and need to be considered, and adjusts for those rather than even having to lay out explicit medical information for a teacher who will never understand it, you know?
So that’s one of the things that we’re hoping our National Insights for Education Directories will be able to do in providing families and teachers of schools that, just in time information on a specific condition, and hopefully beyond that, as I said, getting to the place where we can just make really highly nuanced adjustments for individual students in their Health and Safety Plan and the Individual Learning Plan to ensure that all of those things, including, as you said, things like excursions or phys ed or drama or art or music, as well as the core subjects, are able to be navigated in a way that allows that young person to reach their potential and do things that they enjoy and like and that they’re good at too.
So that’s my little plug. So not so much a little plug probably. But as we hit the end of this conversation, Ella, which has been so fabulous, is there anything else that we should be asking about school quality of life for kids with thalassaemia?
Ella Luong 47:43
One thing that me and my husband have thought about through school is that, going through high school, I think we’re not there yet, but we’ve got a lot of questions throughout high school and even through university and at the end – at work.
There is no, I don’t feel that there is a recognition for the, you know, if these kids that become adults have to miss out on one day a month, how is work going to be perceived with that?
So, these are the questions that I’m quite interested to keep following to see, like, how will that evolve or change or be adapted? Because that has a direct impact on my two kids as they grow up.
You know what if they miss out on those exams. What is done in place, so they don’t feel left behind through high school and through university and through the workforce.
Megan Gilmour 48:38
Completely agree with you, and that’s one of the reasons why we push so heavily for learn from anywhere through two-way, digital connection into the classroom, because we know that universities have things online and VET sector has things online, and fortunately, now work from anywhere.
Well, maybe the young person can continue to be at work while they’re having their transfusion, or their infusion, you know what I’m saying? So that’s why we’re saying, if workplaces can do that, if, if that’s where we’re heading, why can’t that happen at school?
We started this in 2017, and well before that, was in planning to do this, and then we’ve we have proved it. We have demonstrated across Australia. We have thousands of data points. But our biggest question is, why when we could do it overnight in COVID and why when everything post-school is heading that way as well – can we not do it at school?
Because I personally – having sat through many blood transfusions with my son, I know absolutely that those moments, if he was well enough, could be used to be online, in class, joining in class. So, I give that as a really key example here, because it’s totally possible, and we’ve had kids do it.
So we will continue to keep working to and using this conversation to, Ella, as well, to provide evidence for the way that we want our governments to start seeing kids with chronic conditions, and also to note that these kids do experience a lot of trauma as well, and anxiety and all of those things that go with a physical condition.
And we know that there’s this relationship as whole people between a condition, it’s of a physical nature, and the emotional side of that, as well as the mental and cognitive side of that, and all of those things are happening in real time at once for any person.
So, we really want to bring that to the forefront as well, because a really great experience at school and able to continue connection is definitely an enabling factor, a beneficial factor, in these kids’ lives.
So, we get to this point in the call where we have a call to action, and we ask people, we’ll ask you, what’s your call to action for thalassaemia in seven words or less?
Ella Luong 51:38
The call-to-action for thalassaemia, I think, is building awareness. And also getting those blood donations up. I’m not sure, obviously, there’s the Red Cross that have been doing that for many years, but yes, my call to action is like building more awareness around school, and also, the blood donations.
Megan Gilmour 52:00
Yes, wonderful. I second that. The biggest shout out to you, Ella and to Thalassaemia and Sickle Cell Australia, who introduced us to you for this webcast. And I want to shout out to Thalassaemia and Sickle Cell Australia. You’ll find them over at www.TASCA.org.au [https://www.tasca.org.au]. Go there, give generously, read, look up information, whatever you need to do.
We love your work, and we’re so grateful to you, Ella, for today, but also the fact that you’re out there helping others who have this, the navigation of this journey, to make it easier on them, to make them feel like they’re not alone and that the kids can lead a normal life with planning and great advocacy and that resilience that we’ve talked about, that sits within all of that messiness of life that can happen and unpredictability that can happen in these circumstances. So, thank you so much for joining me today.
Ella Luong 53:11
Thank you.
Megan Gilmour 53:13
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 [https://www.missingschool.org.au], because every dollar makes a difference.
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