Terese Butcher

[00:00:05] Speaker A: Hi and welcome to IPL Radio. I'm Mish from Good Vibrations and you're with me in our beautiful podcast room today at the IPL Studios. I have with me Therese today. Hi Therese, how are you? Thank you for coming in. I do want to let everyone know that today this is a bit of a warning content warning because we are, it could be distressing for some people. We are going to be talking about terminal illness in very young people. So if that's something that is going to trigger you, please, I suggest you switch off now. But for those that are staying with us, thank you so much for staying with us. And Therese is going to explain to us why she's here and her story. So where would you like to start with that, Therese? [00:00:47] Speaker B: Yeah. So my name's Therese and I am the auntie of a beautiful little girl called Aurelia who has been diagnosed with severe pulmonary hypertension. Our family have recently been told that she's near end stage of the condition. And you know, the hospital have said there's nothing they can do for her so, well, there's nothing left to do do for her. And we have kind of come together and said that's not good enough. So we're now trying, I've started a gofundme for my brother to try and raise financial support for her because we do, it would seem we have options overseas to potentially get her a heart lung transplant. And we have been told, you know, very firmly from the hospitals in Australia that have been involved with Aurelius care that there's no transplant options for children her age in Australia. Yeah. [00:02:04] Speaker A: Can I ask, did this condition happen at birth? [00:02:10] Speaker B: So it would seem that she was born with it. She had some heart issues as a little baby. One of her valves plugged, didn't close. So we were made aware of an issue but there was nothing they could do surgery wise until she hit a year old at about just over a year they started to organise for a surgery. She had that surgery, I believe it was the end of last year and then since then it's been become apparent there was something else. So earlier this year she was diagnosed when they started looking into, okay, what's happening and it became apparent. [00:02:57] Speaker A: So it wasn't picked this up earlier? [00:02:59] Speaker B: It wasn't picked up earlier. [00:03:00] Speaker A: Is it something that could have been picked up earlier or she was just too young? [00:03:05] Speaker B: Potentially. But when they're, you know, little bodies do weird things. The hospitals say so yeah. [00:03:12] Speaker A: How old is she? [00:03:13] Speaker B: She's 23 months. So a month shy of her second birthday and she's currently in hospital. [00:03:21] Speaker A: Oh, is she? [00:03:21] Speaker B: Yeah. [00:03:22] Speaker A: That's difficult. That's difficult. Not only for her, but for her family. [00:03:26] Speaker B: Yeah. [00:03:28] Speaker A: So her mother and father obviously in and out of the hospitals constantly. Do they have to stay with her in the hospital? [00:03:34] Speaker B: Yes, someone's with her 24 7. Yeah. So we're between the two families, we've got shared care of her and we're all taking turns and being there as much as we possibly can. One good outcome that's come up recently was a hospital over east told us of a clinical trial that's happening with medication. So there was a medication that wasn't. That she wasn't, you know, didn't meet the criteria for originally. But in the last couple of weeks it's come available in another form. So I believe it's like a tablet and then they make it into like a liquid for her with her young age. So she started on that a week ago Thursday, last week. [00:04:21] Speaker A: Okay. [00:04:21] Speaker B: And they've started her on a very, very low dose and as of yesterday, they've done a slight increase to try and find what her base, you know, her maintenance level, they call it. [00:04:33] Speaker A: Because it's a new thing. [00:04:34] Speaker B: Because it's a new thing. They have to start really low dose and then just see how she goes. [00:04:39] Speaker A: And so that's covered by Medicare? [00:04:40] Speaker B: Yes. [00:04:41] Speaker A: Great. [00:04:41] Speaker B: I believe everything to date has been covered. [00:04:43] Speaker A: So how is she after the medication? Have you seen any change? [00:04:50] Speaker B: We haven't seen any change, which is good because there's been no negative effects. Right. So they did say that there were some potential negative effects that could come out, but we haven't seen anything. Anything yet, which is good. They did tell us that it could take up to three months to see a change in the pressures, which is what the medication's for. It's to relax the lungs so that the lungs can increase uptake of oxygen. The condition, as horrific as it sounds, the condition leads to a form of suffocation because the body needs the oxygen. [00:05:28] Speaker A: So she'd be on oxygen all the time as well. [00:05:31] Speaker B: She's actually not on oxygen now, which is good. But it's not an oxygen issue as such. It's how it's affecting her whole body. So she's a very unwell little girl being monitored very closely. [00:05:48] Speaker A: Difficult conversation. How have you seen changes from when she was born to when they discovered that she had this issue? What were her physical and characteristic changes that happened? [00:06:06] Speaker B: I'm just going back to when she was born and her beautiful little baby and I was there when my brother held her for the first time. I'm getting emotional. But so the condition leads to developmental delays. So, you know, her development is delayed. She's in the one percentile of her age in terms of size and weight and everything. So she's little for her age. [00:06:35] Speaker A: Is she eating or is it cheap? [00:06:39] Speaker B: She does eat, but very little. She isn't hungry very often. [00:06:45] Speaker A: She's not a favourite to eat. [00:06:47] Speaker B: She loves Bolognese. Absolutely loves Bolognese. [00:06:51] Speaker A: That's good. [00:06:52] Speaker B: You know, we could give her a big bowl of it and probably eat a little bit more if we gave it to her. [00:06:58] Speaker A: Yeah. So again with her characteristic, does it affect her? I did do a little bit of research on it yesterday. It would affect her strength. She would get dizzy a lot. [00:07:15] Speaker B: Yes. She's constantly fatigued. Yeah, she's constantly fatigued. Like I'll turn up to the hospital with my children. I got three girls, seven year old, five year old and an 11 month old. And Aurelia absolutely loves them. [00:07:29] Speaker A: How do they cope with seeing her in the hospital? [00:07:32] Speaker B: We've had some big conversations with them recently about what's happening. Originally it was just that she's unwell and needs some help. And then as things have progressed, we've had the big chats with them and have explained that we really need to get her a transplant overseas. So Mummy might be on the TV or the radio talking about Aurelia and. Yeah, we just keep an open dialogue with our kids on everything. Quite. Matter of fact, our seven year old, more so, is kind of coming to terms with it because we went through the same thing with our son. I had a 13 day old son, Arden. My husband and I, we lost our, our first little boy three years ago to pulmonary hypertension. So the same thing. [00:08:18] Speaker A: Is it hereditary, do you think? [00:08:20] Speaker B: It can be genetic. But we were, we had our genetics tested and it was idiopathic. And then, you know, my brother and mother have also been told the same thing. So it's. But to strike two families and cousins, it's really hard. [00:08:40] Speaker A: So you're going through it again? [00:08:42] Speaker B: Yes, which is kind of partly why I'm motivated to go. No, I refuse, I refuse to give up. [00:08:50] Speaker A: You're the strength. [00:08:51] Speaker B: We're no stone unturned and we're doing everything and anything. [00:08:55] Speaker A: So where does it, where do we go from today? Like she's in hospital. She's been given a prognosis of it being terminal. Has she been given time? [00:09:08] Speaker B: Yes, we recently had a conversation and they've recommended her for palliative care, which eventually leads to withdrawal of support for her. Our family have, in no uncertain terms, said we don't accept that, you know, whilst we still have glimmers of hope overseas, that's our focus. We're waiting on referrals from the hospital for both St. Vincent Hospital over East. They have a specialist care team that deals with heart and lung in little children, so we kind of want a second opinion from them. Plus we're also waiting on referrals from Texas Children's Hospital, Stanford Children's Hospital in America and then the Great Ormond Hospital in the uk. Those are our. Our hopes to get her to. To. We're hoping this medication buys her enough time to get her overseas. [00:10:01] Speaker A: Right? Yeah. [00:10:02] Speaker B: But we've also been told the costs that come with that, astronomical, you know, three, $3 million plus is what we're looking at. So the GoFundMe is all of that is going to be pulled to try and get her a transplant overseas. [00:10:16] Speaker A: You're on a time restraint as well? We are, absolutely. [00:10:19] Speaker B: We need everything expedited. I've written to the. The health minister, we've written to our local and federal ministers. I'm trying to get in front of media, podcasts, radio, anything and everything to try and expedite the process, because we do. [00:10:37] Speaker A: Are you getting support with that, with media and local candidates and all that sort of stuff? [00:10:44] Speaker B: Just me and family tagging radio stations and media and, you know, my self tagging. I'm on TikTok, Instagram, Facebook, everything I possibly can think of. [00:10:58] Speaker A: You're in this area? [00:10:59] Speaker B: Yeah, I live in Rockingham. [00:11:02] Speaker A: Have you been to the City of Rockingham offices and asked for assistance with that? [00:11:06] Speaker B: Not yet, but I have written to. [00:11:08] Speaker A: Don't write. Go. [00:11:10] Speaker B: Yeah, writing. [00:11:11] Speaker A: Take Isabella. You haven't got time. Yeah, you really need to now start stepping in the door. [00:11:16] Speaker B: Yeah. I think I have been thinking about doing some on scene, just some lives on my socials at the hospital. Try and gain some traction and attention. [00:11:25] Speaker A: I think you have to make it personalised and it's all very. People are skeptical when it comes to GoFundMes, unfortunately. [00:11:32] Speaker B: I understand you need to make it. [00:11:34] Speaker A: A personal now and having that, the vision of her in hospital, having the emotion of the family, it pulls on people's heartstrings. [00:11:50] Speaker B: Yeah. [00:11:51] Speaker A: And it makes it a real thing. [00:11:52] Speaker B: I lead from my heart and everything that I've been posting is from my heart. There's videos online of me crying, you know, trying to plea for some support and yeah, we're Doing. [00:12:03] Speaker A: Would the family be open for you to take video footage of her? [00:12:08] Speaker B: I have been taking little videos here and there and, like making my TikToks and reels and stuff. So the family are open to that. Originally it was no, we don't want social media, which is fair, but we kind of had to go. Look, we're asking for our community, we're asking for our state, our country and hopefully the world to get behind us. So the GoFundMe is help Peter save Aurelia's life. [00:12:34] Speaker A: So Peter P E T E R. Yep. [00:12:36] Speaker B: P E T E R. Help Peter save Aurelia's life or little Aurelia's life. [00:12:41] Speaker A: Yeah, I have posted that on my page. I think we posted it on IPL page. [00:12:46] Speaker B: Thank you. [00:12:47] Speaker A: So as much as we can get out there, but you need to start pushing it out to all group pages. Have you got. Have you joined a heap of group pages? [00:12:56] Speaker B: I've joined some pulmonary hypertension pages, mainly. [00:12:59] Speaker A: For looking for support community now and get the word out there, because I haven't seen. [00:13:05] Speaker B: I posted in my local mum's group, but, yeah, I'm gonna start expanding everywhere. [00:13:10] Speaker A: Because I haven't seen it in the community. [00:13:12] Speaker B: Okay. [00:13:13] Speaker A: You need to. You need to be a nuisance now. Do you know what I mean? [00:13:17] Speaker B: Which is very hard. Someone like me, I'm quite quiet, but I do know, absolutely. If you want to achieve what you. [00:13:23] Speaker A: Want to achieve, you're going to have to push it, you know, have to push it. [00:13:27] Speaker B: Our school, my children's school, recently shared it and we managed to get some donations through there, which was amazing. [00:13:36] Speaker A: Can I do a fun dive with. [00:13:38] Speaker B: They've spoken to us and I just said, at the moment, I'm kind of just getting all my ducks in a row and then I'm going to start going, right, I want to do this, I want to do this, I want to do this. But they're willing to support us in any way possible, which is fantastic. [00:13:51] Speaker A: Have you researched anyone else that's been going through the same situation here in Australia? [00:13:56] Speaker B: I haven't researched, but I have made some connections with another mum here in Perth. Siarelia's not the first and she's not going to be the last. And we've kind of been comparing the care we've been receiving and where her daughter is at and where Aurelia's at, and very, very similar, Similar conditions, similar results. Yeah. And they're looking at potentially starting Celexipag as well. [00:14:24] Speaker A: Have you seen any good results overseas? I Suppose having the organ donor is really the only way that you're going to get. [00:14:35] Speaker B: Yeah. [00:14:35] Speaker A: I don't really know anything about organ doning but I would assume being that she's so very, very young, she'd have to have multiple. [00:14:44] Speaker B: She needs a heart and lung transplant. [00:14:46] Speaker A: And will that grow with her? [00:14:47] Speaker B: Yes. [00:14:48] Speaker A: Okay, that's good. [00:14:49] Speaker B: The reason we were told, and this is one thing that I want to bring to our government's attention is the reason we were told they don't do heart and lung transplants on children under 4 or 15 kilos is because the outcomes are not favourable. And as a family, to be told that now twice, you know what's not favourable? Death. Death's not favorable. So we really should be doing anything and everything we possibly can to help. [00:15:15] Speaker A: Our little children is the best option rather than the end. You know what I mean? [00:15:21] Speaker B: Exactly. [00:15:22] Speaker A: And as a parent, as a mother, as a family member, as a community member, you would do anything you possibly could to save a child's life. [00:15:33] Speaker B: That's what I'm doing. I don't talk to people, I'm usually head down, quiet, I'm quite reserved. [00:15:39] Speaker A: How are you coping with that though? [00:15:41] Speaker B: I'm doing okay. I'm checking in with myself. I've got pretty good boundaries, you know, I've had media reach out and say, hey, are you available? No, I'm not, but I'm available, you know then yeah, yeah, I'm still. [00:15:53] Speaker A: Because you've got your kids as well. [00:15:54] Speaker B: Exactly. Like we've got three, three kids to look after and my husband Fifo and we're trying. Yeah. So we're just doing whatever we can with the capacity that we have and you know, I'm giving her next to everything that I possibly have because we're so time, it's so time critical. [00:16:13] Speaker A: Yeah. When we going back to other children with the same situation here and you mentioned that you've spoken to someone here in Perth. Have you seen results, good results overseas? [00:16:28] Speaker B: Yes. [00:16:29] Speaker A: You have? [00:16:30] Speaker B: Yes. [00:16:30] Speaker A: So. [00:16:32] Speaker B: I've read of good results overseas in children. You know, little tiny babies are having heart lung transplants and they're getting favourable outcomes. So we're kind of like, okay, if that's, if this is Australia's outlook, that's fine. If we don't have the specialists or the capacity to do these surgeries, we need to get her to somewhere that does. So what I'm asking for is community, country and Australia, the government hopefully will help us, would like to see the government help us and step in and go this is how we can help expedite the process. This is how we can help facilitate the process, you know, and even financially, we've got to raise $3 million. That's. That's out of reach for the average family. Absolutely. So that's why I'm big on trying to get through social media and reaching out and just saying, look, if 1 million people donated $3, we could save her, you know, $3. [00:17:31] Speaker A: So you need to get noticed by a million people. [00:17:34] Speaker B: I do, absolutely. [00:17:35] Speaker A: That's the thing. The other option is to. To contact the bigger companies. There's a heck of a lot of big companies here in Kwinana, as you know. That might be a way to get through. You've got to. It's about. Unfortunately, it's now about time and it's about money and for people giving you $5 here and there, it's going to be a very slow process. [00:17:58] Speaker B: Yes, I know. [00:17:58] Speaker A: And one that you might not get done in time. So you may have to go for. [00:18:04] Speaker B: Kind of hoping the government will go, hey, we'll pay for it, because it's not available in Australia and, you know, under the Geneva Convention, she has a right to live. [00:18:12] Speaker A: Have you contacted the government? [00:18:14] Speaker B: We've written to the health. The health minister. So we're waiting, we're waiting to hear back. [00:18:19] Speaker A: When did you arrive? [00:18:20] Speaker B: Close to a week ago. We're still waiting on referrals from the hospital from close to two weeks ago. So we're following up on that. I really think I need a. Disability advocates come. Come on board and try and help us because, you know, we seem to be getting walls. We're coming up against walls constantly. [00:18:39] Speaker A: Red. [00:18:39] Speaker B: Red tape. That's what I'm trying to say. [00:18:41] Speaker A: Yeah, definitely. [00:18:42] Speaker B: And. And it's like, we don't have time for red tape. Can you please. I just. I'm way. I'm out of my depth. Like, this isn't something that I know about. I'm just a mum. I'm an auntie. [00:18:52] Speaker A: Do you know anyone you can get assistance from? [00:18:55] Speaker B: I've reached out to one disability. Disability advocate service in Perth here, and they don't have capacity to support us, which is really hard. I'm waiting to hear back from about two or three other ones. [00:19:07] Speaker A: The family's not getting any support at all? Services at all? [00:19:10] Speaker B: No, nothing. [00:19:11] Speaker A: Is the government. [00:19:12] Speaker B: There's a social worker at the hospital that's on board. [00:19:15] Speaker A: But does the family have other children or is there any child? [00:19:20] Speaker B: Is there any child? [00:19:20] Speaker A: Yeah. [00:19:22] Speaker B: So. So between the two families, we're Coming together and trying to wrap Aurelia with as much love and have as much time with her as we possibly can. And then in between me bathing our children and, you know, all of that, being a mother and a wife and daughter, I also care for my parents, of course. [00:19:43] Speaker A: Yeah, it's a lot of work and. [00:19:46] Speaker B: Yeah, we're just doing everything. [00:19:48] Speaker A: I mean, as a parent and as a mother, you tend to robotic. You're being very robotic. You've got. You got your blinkers on and that's what you've got to do. But there'll be a come. There'll come a time where those blinkers are going to fall and you're going to go, oh, my God. You need assistance as well. [00:20:08] Speaker B: I had a bit of a cry over. Over the overwhelming feeling of trying to do everything last night. And, you know, I had people reach out and go, you're amazing for what you're doing. And messages like that kind of help me keep going. And so does Aurelia. Yeah, you know, she. With everything she's going through, she's still smiling, she's still laughing. She still loves giving us hugs. You know, she's fighting just as much as we are to stay here. And. [00:20:37] Speaker A: You can't imagine having to fight for your life and such a. Such a young age. She hasn't even had life yet. [00:20:43] Speaker B: She hasn't even had a second birthday. Exactly. Which is heartbreaking. [00:20:47] Speaker A: And no one should have to go through that, especially in Australia. We shouldn't have to be fighting for assistance to save our lives. It's just not right. [00:20:59] Speaker B: And my husband and I know all too well what it feels like to say goodbye to someone that you've given birth to. [00:21:04] Speaker A: And, you know, and I don't want. [00:21:08] Speaker B: To do that again. And I don't want to see my brother go through that. [00:21:15] Speaker A: Does he have the capacity to assist you with the media? He just doesn't have the capacity. Okay, that's fair enough. [00:21:22] Speaker B: He's asked me to advocate on their behalf and so that's what I'm doing. No one else really in the family has the capacity to do it. So I've gone, I'll do it. I don't know what I'm doing, but I'm going to do it. I'm going to give it a go. [00:21:36] Speaker A: You're very courageous to be doing it. [00:21:37] Speaker B: Because it's a big task. [00:21:40] Speaker A: It's a huge task, and I commend you for even giving it a go. [00:21:47] Speaker B: But I hope no stain unturned. [00:21:51] Speaker A: I just hope it works out. In the most positive way that this child can see a future, can enjoy the sun. She doesn't even get to go outside. [00:22:02] Speaker B: Yeah, exactly. She's stuck on the ward at the moment, and we're like, we just want her to feel the breeze. [00:22:08] Speaker A: Is she able to go out at all? No, not at all. [00:22:10] Speaker B: Not at all. She's. She's very unwell and, yeah, she deserves to live a long, happy, healthy, and deeply loved life, which is what she'll have if we can get her the support that she needs and hopefully get her the transplant and the medication we're hoping will buy us time to do that, because. Yeah, well, there's a lot of red tape. [00:22:31] Speaker A: That's not fair. [00:22:33] Speaker B: And saving a life should never be. [00:22:34] Speaker A: About money or red tape. That's for sure. [00:22:38] Speaker B: We should have the choice without having to go, okay, but how do we pay for it? So I'm really hoping the government can help us financially get her over there and get her back. And then the hospitals have said if she gets over there and gets a transplant and comes back, they're happy to continue her care here and oversee that, but it's just on. It's on the family to get her there and get her back. [00:23:00] Speaker A: Okay. So I know that she's on this new medication that you're hoping that will buy her time. The transport overseas will be massive on her. I mean, I hate. I hate flying. [00:23:12] Speaker B: We'll have to get a whole team. [00:23:13] Speaker A: You'll have to get a. [00:23:14] Speaker B: She'll have to get a full medical team to get her there and get her home. And again, that's. We've been told that's on us to oversee, which is why it feels so overwhelming, like there's so much that has to be done and. And it all needs to be done now because we're already towards the end stage here. We've been told zero to three months. And, you know, we're two weeks into that three months, and there's still so much to be done. I will say that our local community have really shown up for us and they've. We've raised nearly $15,000. As I. As I checked the GoFundMe this morning, which is amazing for pretty much a week since having raised the GoFundMe. So we are. People are trying to do whatever they can, and we appreciate it deeply. And every. Every share, every, like, every comment that's getting us noticed, every donation, it's all going towards us trying to get her. [00:24:12] Speaker A: Can you get onto TV in any way? [00:24:15] Speaker B: I'm trying to there's that program. [00:24:18] Speaker A: We won't mention the program name. There's that program that does small stories. [00:24:22] Speaker B: There's a couple of media channels that have reached out to me. [00:24:26] Speaker A: Yeah. [00:24:26] Speaker B: One has fallen through twice now, one we're still waiting to hear back from and one we've been told that they don't have capacity at this time. [00:24:37] Speaker A: At this time. [00:24:38] Speaker B: Yes. We haven't got time coming into Christmas. They don't have the capacity. So it's. It is urgent. It's. [00:24:44] Speaker A: We can't wait. [00:24:45] Speaker B: We're talking about saving her life. [00:24:47] Speaker A: This isn't a story about someone's house falling over because the. The men didn't fix it. This is someone's life. Yeah, we don't have time. [00:24:54] Speaker B: Yeah. [00:24:56] Speaker A: I don't understand. I don't understand this. [00:24:58] Speaker B: You're a new station. Of course you have capacity too. You're just choosing. [00:25:02] Speaker A: You just move somebody else to just. [00:25:04] Speaker B: Say the uncomfortable thing. [00:25:05] Speaker A: Yeah. [00:25:06] Speaker B: Because we. We already know what. That's. That's what that means. It's not bigger enough of a story for them, which is how. Because she's our world. [00:25:13] Speaker A: How could it not be a big enough story? It's someone's life, a child's life. [00:25:17] Speaker B: That's the biggest story that deserves to live. [00:25:19] Speaker A: That's the biggest story out there. [00:25:21] Speaker B: Yeah. [00:25:22] Speaker A: That's unbelievable. Unbelievable, obviously, but we're not giving up. And I commend you for that because it's overwhelming even for me to think about it. So for actually to be in that situation. Do you sleep at night? [00:25:37] Speaker B: No. [00:25:37] Speaker A: No. [00:25:38] Speaker B: I've had to start taking Melatonin again to help me get a little bit of sleep. I mean, I've got an 11. We've got an 11 month old, so, you know, sleep is already far and in between, but. Yeah, yeah, yeah, yeah. I've started taking melatonin. Helped me get off to sleep and just try and get some because I've just been beside myself lately. [00:25:55] Speaker A: Oh, gosh. Yeah. [00:25:56] Speaker B: My. My mind, as soon as the kids all go to sleep, it's quiet and I need to do this. I need to do this. I'll tag these and I'll make these videos and. Yeah, you know, I'm forever going, but I also do need to make sure I get time to rest. [00:26:09] Speaker A: You do. So is there support groups out there that you can. Can be using for you? [00:26:16] Speaker B: Probably, but I haven't joined any yet. Yeah. Yeah. I don't have time to talk to anyone really, other than some people that could potentially help us save her. Yeah, I. Yeah. [00:26:28] Speaker A: I just think you need to go to big companies now. Y time is too, it's too precious. So. Yeah, yeah. [00:26:36] Speaker B: I start knocking on doors and I. [00:26:38] Speaker A: Think you need to start being a aggressive about it and not being so nice about it because you haven't got time to be nice. [00:26:42] Speaker B: Yes, I've. Last night when I had my little breakdown over everything, I've kind of reached that point where I'm like, okay, well now I need to be annoying. [00:26:52] Speaker A: You do you need to be that, that squeaky wheel? [00:26:55] Speaker B: Yeah. Well, the squeaky wheel got us on the clinical trial. You know, when I started all of this, there was nothing that could be done. And then, and then the clinical trial that she can now meet and they have pushed the boundaries and I do, we are grateful as a family that they've done that because originally it was only given to 10 year old plus children. So she's. Aurelia is now the youngest person in Australia to ever receive this. [00:27:18] Speaker A: It's a story in itself. [00:27:19] Speaker B: Exactly. And you know, we're hoping and praying for miracles. [00:27:23] Speaker A: Yeah, yeah. [00:27:24] Speaker B: But it is still just a short term solution. We still need the transplant. It's just bias. [00:27:31] Speaker A: The only option exactly is the transplant and Australia will not do it or can't do it, whatever capacity they can't do. So it has to be done overseas. So the only answer for this child's life is to go overseas and have a full transplant done. That's it. That's the only answer to this question. [00:27:49] Speaker B: And we need the hospital to do the referral so that the transplant center can be in touch with that. [00:27:56] Speaker A: Okay. No, say no more. Okay. They're too busy. Yeah, I just, I don't understand. So, yeah, my suggestion is go big guns now. Go the big guns. [00:28:07] Speaker B: Yeah, I'm at that point. If anyone wants to join me, hit me up on Instagram, Facebook, tick tock, message me. I'm open for help. I need all hands on deck. I just an auntie trying to save her niece's life. [00:28:20] Speaker A: Yeah. Okay, so we need to get you out there. We need to get you to be the squeaky wheel. In fact, more of a squeaky wheel. We need you to be annoying because people will need to be able to. [00:28:35] Speaker B: You need to be the wheel on fire. People can't ignore. [00:28:37] Speaker A: Yeah, exactly. Squeaky wheel. They can ignore. They can put headphones on these days because that's what people do. We need you out there. I haven't seen you on social media, so that's why I'm telling you you need to be more Aggressive with this now. And even if it's a matter of sitting in bed for two, give yourself two hours. Because I know social media can take a lot of time up. Give yourself two hours. Give yourself a time and just hit, hit the big guns. There's $5 here and there. I know. That's amazing. And people are just amazing. [00:29:03] Speaker B: Yes. [00:29:04] Speaker A: It's not going to get you there quick enough. [00:29:05] Speaker B: Yeah, we need someone with big pockets to go. We can help you. [00:29:09] Speaker A: The organizations, there's a lot here. [00:29:11] Speaker B: We had a family member write to the US President, so we'll see. See if that comes from anything. [00:29:17] Speaker A: Good luck with that one. Anyway, anything helps. You've got to do what you what you can. Absolutely. Got to do what you can. [00:29:24] Speaker B: We said no stone unturned, so that's what we're happening. It doesn't hurt to ask. [00:29:28] Speaker A: You have to do whatever. So what's your social media? [00:29:32] Speaker B: My name's Therese Butcher. So I'm on. I'm on T H E R E S E. Yes. [00:29:37] Speaker A: B U T C H E R yes. That's on Facebook. [00:29:41] Speaker B: So that's on Facebook. I'm on Instagram. If you look up Therese Butcher as well. Tick tock. Trey's Butcher as well. [00:29:48] Speaker A: Yeah. [00:29:49] Speaker B: One of my Tik Tok videos has reached almost 8,000 views, so I'm slowly gaining traction on Tik Tok. But I need a lot more. And, yeah, reach out to me. The GoFundMe page is public. My. All of my posts on my social media about Aurelia are public. [00:30:04] Speaker A: Yes. [00:30:04] Speaker B: So if you search Aurelia Ward, it'll come up as well. [00:30:07] Speaker A: Her name. [00:30:08] Speaker B: A U R E L I A Irelia Ward. [00:30:14] Speaker A: Okay, great. [00:30:15] Speaker B: Yeah. [00:30:15] Speaker A: If you could post some stuff onto IPL Radio for us or send me some information. I do have the information that I posted on my page, but I'm very new to podcasting. I don't have a lot of followers right now, so I'm not going to be able to achieve much for you, but I can. If I can help in any way. IPL has more following, so IPL might be able to help you out a little bit more in getting the word out there. But I suggest getting into all community pages. Join every single community page there is out there, and there's a lot. And I would go as wide as possible. [00:30:45] Speaker B: I'm on some local ones just for show. Rockingham, Waikiki, Wombo, Sherwood. [00:30:50] Speaker A: Go for it. Absolutely. Go for it. [00:30:53] Speaker B: Mandra, start posting it everywhere. [00:30:55] Speaker A: Go for it. Be that nuisance that you need. To be. And I think if. If this doesn't go the way that you plan it to go, God help us. You will know in your heart that we have done everything possible for her which will allow you to maybe have some sort of peace. Hopefully, that we won't get to that stage. [00:31:24] Speaker B: But it's always in the back of my mind when you're. [00:31:27] Speaker A: We have to be realistic about it. [00:31:30] Speaker B: And the hospital, what they've said, they're. They're being realistic, you know, matter of fact, and we're like, we understand that. [00:31:35] Speaker A: That'S good that they're doing that because you don't want any false hopes. [00:31:38] Speaker B: No, exactly. Right at the moment, our only hope is to get her overseas. [00:31:42] Speaker A: The situation is the only option for her life is to take her overseas. [00:31:45] Speaker B: Absolutely. [00:31:46] Speaker A: And for her to get a transplant, and that's the only way we need to go. So it's all about finances now. Finances, finances, finances. Without that money, there is no option here in Australia. [00:31:57] Speaker B: Without the money, there is no hope. [00:31:59] Speaker A: No. [00:31:59] Speaker B: With $3 million and it's just money. But with $3 million, who came up with that figure, potentially save her life? So Stanford Hospital, that was a figure that we came across online. [00:32:11] Speaker A: Australian. [00:32:12] Speaker B: Sorry. Stanford Hospital in America. [00:32:17] Speaker A: So 3 million Australian. [00:32:18] Speaker B: 3 million Australian dollars. Yeah. It was 1.6 million American. And I was like, oh, we need 1.6 million. Okay, we can achieve that. And then we realized conversion. [00:32:28] Speaker A: Is that transport as well? [00:32:30] Speaker B: No, that's just for her transplant. That's just for a transplant. So we need all the money to get her over there and get her back as well. Yeah, And. And whatever it costs while we're over there. So we're looking at over $3 million to try and save her life, which is why we need everyone. Saving your life should never be about money. No, but that's. That's the situation we find ourselves in. [00:32:56] Speaker A: I'm really saddened to hear that. You have to fight for somebody's life for someone of such a young age that she hasn't even had a chance. [00:33:06] Speaker B: She hasn't even blown two candles off her birthday candle. [00:33:09] Speaker A: She hasn't even had a chance to live abnormal life yet. She's never been a child that could go out in the garden. So she's always been quite sick, I imagine. Right. And obviously she's only too. So is she walking? [00:33:24] Speaker B: Yes, she is walking. Yeah. But she can only walk so far before she gets too fatigued. [00:33:28] Speaker A: So she's never really been to a playground park. She's never been, you know, been around A group of children happily enjoying her. She hasn't even had a childhood. [00:33:40] Speaker B: No. [00:33:40] Speaker A: And we all take it for granted. You know, we've had a childhood, but she hasn't had a chance. [00:33:45] Speaker B: Yeah. She just wants to run around. Yeah. [00:33:51] Speaker A: And that should be just a guarantee. [00:33:53] Speaker B: Exactly. Every child deserves to have a childhood. [00:33:56] Speaker A: Yeah, absolutely. And for the government for Australia to say we can't. I'm surprised. Australia to say that we can't do any more for her. [00:34:05] Speaker B: Yeah. Why is it that the UK and the US can and we can't? That needs to change. It must change. [00:34:11] Speaker A: Why can't we? Is there exactly or is it medical facility. [00:34:14] Speaker B: They were told because the outcomes aren't favorable. [00:34:18] Speaker A: Wasting their time. [00:34:18] Speaker B: So what the statistics are behind that? I don't know. We've not been given anything. We've not been given any. Any facts around where that opinion or basis has come from, other than that's what the specialists have told us. [00:34:30] Speaker A: So they do have the ability to do that, but they just won't because it's just the outcome's not going to be. [00:34:39] Speaker B: That's what we've been told. Yeah. I have no doubt that we can do that surgery in Australia. We have top leading specialists in the world here. You know, there's a couple of ovaries that are leading specialists in the world. And how. [00:35:00] Speaker A: I don't know anything about donor, but I know there's donor lists for things for organs that match the person. Does she have to go through that process as well? [00:35:09] Speaker B: Yeah, like anyone. We'd have to get on. [00:35:11] Speaker A: So there's a time restraint on that as well? [00:35:13] Speaker B: Yeah, absolutely, absolutely. [00:35:15] Speaker A: Can you get on that now? [00:35:17] Speaker B: We need the money. We need the money. Like in America, you have to have X amount of money before they'll even add you to the list. [00:35:25] Speaker A: Is America the only option here? [00:35:27] Speaker B: Pretty much. America or the uk. [00:35:29] Speaker A: Why not the UK then? [00:35:31] Speaker B: Well, we're waiting here back from the transplant centers. We know of three in the world that we can apply to. We've asked for referrals for all three. We're still waiting on the referrals nearly two weeks later. And, you know, we need these things expedited. There should not be red tape around saving a child's life. [00:35:52] Speaker A: No, that's right. That's what it comes down to in the end, isn't it? Yeah. [00:35:55] Speaker B: The world should be coming together and going, hey, we can save this baby. Let's go. [00:36:00] Speaker A: Let's just do whatever we want. [00:36:02] Speaker B: Let's help this family. That's what we're Hoping and you know, I'm putting it in the universe that we need help and I trust that'll happen. I see myself as spiritual. I was raised Catholic, but I see myself more spiritual and I believe that the universe provides. [00:36:17] Speaker A: And have you asked for assistance through the church? [00:36:22] Speaker B: I personally haven't, no. But we do have family members that have been going to the local churches. We have received close to a couple of thousand dollars in donations from churches from family members, local community, community churches, which has been amazing. And friends churches. [00:36:40] Speaker A: Spiritually. You want their help as well. [00:36:42] Speaker B: Yeah, exactly. [00:36:42] Speaker A: Anything that could possibly help in this situation. [00:36:47] Speaker B: We're just asking on humanity to care for her the way we do and to help us save her life. [00:36:55] Speaker A: Yeah. She has the right to do that. [00:36:57] Speaker B: Absolutely. [00:36:59] Speaker A: All I can do is thank you for coming in today. It's been extremely, extremely courageous for you to come in. It's a conversation that is difficult to have, especially when it's so very raw. I commend you for living your normal life as best you possibly can while this is all happening. My heart goes out to Peter and his family and to your family. I wish I was able to help you in any way way I possibly can. [00:37:29] Speaker B: Serving me on the podcast is probably. [00:37:31] Speaker A: The only possible way that I can. [00:37:32] Speaker B: Help you and we deeply appreciate it. [00:37:35] Speaker A: Anytime that we can help you here in ipl if you need to come back in and you know, get the word out there, we're always here for you. [00:37:41] Speaker B: Thank you. [00:37:42] Speaker A: If you ever need to come in the door and just have a coffee and have a chat with someone. IPO radio is all about mental health awareness. So we're very, very into that. If you just want to come in and just get away from the world. [00:37:52] Speaker B: Thank you. [00:37:53] Speaker A: There's a couch here, coffee here. [00:37:55] Speaker B: I appreciate it. I come past here a lot so you'll see me again. [00:37:59] Speaker A: There's always someone here for you. I wish I could do more for you, but I honestly wish you the absolute best. And I hope that I see an amazing story on TV about the courage of the family and this gorgeous little child and see her enjoying the sun and running around and a In. In a field of. Of flowers. [00:38:22] Speaker B: The world will see us get on a plane, get it to America and you'll see us coming back home where we can be supported and she can grow. [00:38:28] Speaker A: Absolutely fantastic. It's going to happen. It's going to happen. All the best. [00:38:33] Speaker B: I trust. Thank you. [00:38:34] Speaker A: Thanks for listening to us. IPL Radio. This was mish and yeah, all the best to you and take care sa.