1 00:00:00,160 --> 00:00:02,639 Speaker 1: You might recall about a week and a half ago 2 00:00:03,080 --> 00:00:07,000 Speaker 1: we spoke to a wonderful um who her and a 3 00:00:07,040 --> 00:00:10,639 Speaker 1: little family were selling their beautiful home in Stuart Park 4 00:00:10,960 --> 00:00:13,920 Speaker 1: in an effort to raise money so that that funding 5 00:00:13,960 --> 00:00:17,279 Speaker 1: could go towards a gene therapy drug for their little girl. 6 00:00:17,360 --> 00:00:18,360 Speaker 2: To Lula Moon. 7 00:00:18,720 --> 00:00:21,079 Speaker 1: Now joining me on the line to tell us how 8 00:00:21,079 --> 00:00:23,840 Speaker 1: it all went, it is Golden witch Rod. Good morning 9 00:00:23,880 --> 00:00:25,040 Speaker 1: to you, Golden. 10 00:00:25,480 --> 00:00:28,200 Speaker 2: Good morning Katie. Thanks for having me on your program again. 11 00:00:28,480 --> 00:00:31,560 Speaker 1: Lovely to have you on the show. Now, how did 12 00:00:31,640 --> 00:00:32,560 Speaker 1: the sale go? 13 00:00:34,400 --> 00:00:39,040 Speaker 2: Well, it went to auction last Thursday and it went 14 00:00:39,159 --> 00:00:42,080 Speaker 2: under the hammer, and I have to tell you we 15 00:00:42,240 --> 00:00:46,640 Speaker 2: got the reserve price that we had put forward. So 16 00:00:47,880 --> 00:00:51,159 Speaker 2: it is done and as good. 17 00:00:50,320 --> 00:00:55,240 Speaker 1: Well, I know it would be very bittersweet. I'm assuming, Golden, 18 00:00:55,280 --> 00:00:58,160 Speaker 1: because while you must be pleased that you you know 19 00:00:58,240 --> 00:01:00,240 Speaker 1: that you got the price that you are well, you 20 00:01:00,240 --> 00:01:03,760 Speaker 1: know you got the reserve price. You know it's also 21 00:01:03,880 --> 00:01:06,000 Speaker 1: you love jo home. 22 00:01:07,520 --> 00:01:11,399 Speaker 2: Absolutely. Yeah. Look, I was devastated at the time that 23 00:01:11,480 --> 00:01:14,759 Speaker 2: I think we decided to put that house up to sail, Katie. 24 00:01:15,160 --> 00:01:17,520 Speaker 2: It was a real mark in the end of that 25 00:01:17,640 --> 00:01:20,960 Speaker 2: dream for our family. But like you say, we put 26 00:01:20,959 --> 00:01:23,760 Speaker 2: a reserve price down. We knew what we wanted and 27 00:01:23,800 --> 00:01:27,000 Speaker 2: what would help contribute towards this gene therapy for Tallula, 28 00:01:27,520 --> 00:01:29,960 Speaker 2: and we were determined to get that reserve price. We 29 00:01:29,959 --> 00:01:32,680 Speaker 2: were so fortunate that we had a buyer. It was 30 00:01:32,720 --> 00:01:35,880 Speaker 2: a local and wanted you know, he saw the value 31 00:01:35,880 --> 00:01:39,280 Speaker 2: in our home and he met that reserve price, So 32 00:01:39,360 --> 00:01:42,080 Speaker 2: we really couldn't be happier. I suppose in that regard, 33 00:01:42,200 --> 00:01:47,080 Speaker 2: I still am just so, I guess I just you know, 34 00:01:47,240 --> 00:01:50,240 Speaker 2: I hold on hope that we will be able to return. 35 00:01:50,520 --> 00:01:53,000 Speaker 2: I think feeling like we lose that home, it feels 36 00:01:53,000 --> 00:01:55,480 Speaker 2: like Darwin's just that one step further away again. But 37 00:01:55,520 --> 00:01:58,440 Speaker 2: I do know it's just a plane ride away from 38 00:01:58,440 --> 00:02:00,760 Speaker 2: where we are right now to be close to the research. 39 00:02:00,800 --> 00:02:02,640 Speaker 2: And I know that we can build a home there 40 00:02:02,680 --> 00:02:05,760 Speaker 2: again one day. It's just that will be. I guess 41 00:02:05,800 --> 00:02:06,880 Speaker 2: I'll have to wait and see. 42 00:02:07,200 --> 00:02:10,359 Speaker 1: I hope so, and you know, I like, yeah, I 43 00:02:11,960 --> 00:02:16,320 Speaker 1: feel really passionately that I hope that that happens for 44 00:02:16,400 --> 00:02:18,240 Speaker 1: you guys, and I know that you are doing so 45 00:02:18,560 --> 00:02:23,119 Speaker 1: much for your little girl, as any any family would do. 46 00:02:23,320 --> 00:02:27,720 Speaker 1: But tell me Golden in terms of you know, the 47 00:02:28,120 --> 00:02:30,600 Speaker 1: house sale and in terms of the money that he's 48 00:02:30,680 --> 00:02:35,960 Speaker 1: really needed to try and get things moving with the 49 00:02:36,040 --> 00:02:38,880 Speaker 1: gene therapy, how does this help and where are you 50 00:02:39,000 --> 00:02:41,040 Speaker 1: at well? 51 00:02:41,280 --> 00:02:44,160 Speaker 2: All in all, what's standing in front of us is 52 00:02:44,200 --> 00:02:47,440 Speaker 2: a five million dollar price tag. That's to manufacture this 53 00:02:47,520 --> 00:02:50,200 Speaker 2: gene therapy and get it to the clinic. That means 54 00:02:50,200 --> 00:02:54,000 Speaker 2: get it to the hospitals for Tulula and four other 55 00:02:54,040 --> 00:02:57,040 Speaker 2: little children to be in this small clinical trial. And 56 00:02:57,080 --> 00:02:59,520 Speaker 2: those families who want their children to be in that 57 00:02:59,520 --> 00:03:03,040 Speaker 2: clinical trial Katie's, they're trying to fundraise to get on 58 00:03:03,080 --> 00:03:05,720 Speaker 2: planes to get over here and make that happen. And 59 00:03:05,800 --> 00:03:08,280 Speaker 2: we have got some funds from that after we've paid 60 00:03:08,320 --> 00:03:10,640 Speaker 2: off our mortgage. You know that a few hundred grand 61 00:03:10,680 --> 00:03:12,680 Speaker 2: it's going to go towards that. But five million is 62 00:03:12,720 --> 00:03:16,079 Speaker 2: five million, and let's face it, what we really really 63 00:03:16,120 --> 00:03:18,440 Speaker 2: need and what we've got a grant application in for, 64 00:03:19,320 --> 00:03:22,520 Speaker 2: is a grant from the federal government. And this is 65 00:03:22,560 --> 00:03:25,760 Speaker 2: the thing. You know, I was devastated to lose that house, 66 00:03:26,120 --> 00:03:29,440 Speaker 2: But it's a sick silver lining when you have beautiful 67 00:03:29,520 --> 00:03:33,240 Speaker 2: journalists but yourselves and the NT News do a story 68 00:03:33,240 --> 00:03:35,720 Speaker 2: on us and share that story, because that got out 69 00:03:35,760 --> 00:03:38,640 Speaker 2: there right. That then went out to the Career Mail, 70 00:03:38,680 --> 00:03:41,200 Speaker 2: it went out to Fox News, it went to the 71 00:03:41,320 --> 00:03:45,160 Speaker 2: UK Daily, on UK Daily, and what happened from that 72 00:03:45,360 --> 00:03:49,000 Speaker 2: is that that showed other people our story and that 73 00:03:49,120 --> 00:03:53,680 Speaker 2: also built on donations, but also sharing that message to 74 00:03:53,960 --> 00:03:58,360 Speaker 2: those politicians who sign up on these big decisions, these 75 00:03:58,400 --> 00:04:02,560 Speaker 2: big government grants, that not only we're a case to 76 00:04:02,800 --> 00:04:05,280 Speaker 2: we're not a case to pity, but it's so scientists 77 00:04:05,280 --> 00:04:09,560 Speaker 2: that we're working with have got these incredible research programs 78 00:04:09,320 --> 00:04:12,880 Speaker 2: that warrants this sort of funding. So what I've got 79 00:04:12,880 --> 00:04:15,360 Speaker 2: to be grateful for is that the sixth of aligning 80 00:04:15,440 --> 00:04:17,640 Speaker 2: from selling this house, it'll go on. You know. It's 81 00:04:18,279 --> 00:04:20,880 Speaker 2: it's that trickle on effect, that ripple effect that I 82 00:04:20,920 --> 00:04:24,120 Speaker 2: really feel its value will be more than the million 83 00:04:24,160 --> 00:04:26,160 Speaker 2: and fifty that we sold it for. I think we're 84 00:04:26,200 --> 00:04:29,480 Speaker 2: going to really see the government turn around and take 85 00:04:29,560 --> 00:04:32,440 Speaker 2: notice that this is this is a mission that goes 86 00:04:32,440 --> 00:04:35,279 Speaker 2: on to help so many more children, not just my daughter. 87 00:04:35,560 --> 00:04:37,520 Speaker 2: And That's what I'm hoping for and that's what I'm 88 00:04:37,560 --> 00:04:38,120 Speaker 2: aiming for. 89 00:04:38,200 --> 00:04:42,240 Speaker 1: And Golden the thing is, I mean, we see governments 90 00:04:42,680 --> 00:04:45,920 Speaker 1: spend money all the time on things that we don't 91 00:04:45,960 --> 00:04:50,320 Speaker 1: necessarily want, you know, on different projects to you know, 92 00:04:50,440 --> 00:04:54,480 Speaker 1: federally to help them get re elected, or different things 93 00:04:54,520 --> 00:04:57,200 Speaker 1: that you know that may help a small community, and 94 00:04:57,279 --> 00:05:00,279 Speaker 1: fair enough in a lot of those cases, but we're 95 00:05:00,279 --> 00:05:04,760 Speaker 1: talking about something here that can benefit young children and 96 00:05:05,040 --> 00:05:08,240 Speaker 1: that is going to benefit more, you know, as time 97 00:05:08,320 --> 00:05:11,320 Speaker 1: goes on as well. I'm assuming as that research progresses, 98 00:05:11,400 --> 00:05:13,640 Speaker 1: it may be found that that gene therapy is able 99 00:05:13,720 --> 00:05:16,599 Speaker 1: to help other children that you know, maybe previously we 100 00:05:16,680 --> 00:05:19,520 Speaker 1: hadn't realized it could help. To me, I think if 101 00:05:19,520 --> 00:05:22,320 Speaker 1: we're going to be investing money, if we're able to 102 00:05:22,440 --> 00:05:27,520 Speaker 1: invest money to help sick children, that should be a 103 00:05:27,640 --> 00:05:28,640 Speaker 1: real priority. 104 00:05:29,800 --> 00:05:32,480 Speaker 2: You've given me a goosebump there, and of course you're 105 00:05:32,520 --> 00:05:35,440 Speaker 2: singing to my song sheet. I mean that is just 106 00:05:35,720 --> 00:05:39,160 Speaker 2: absolutely one hundred percent how I feel. And also what 107 00:05:39,240 --> 00:05:43,680 Speaker 2: the scientists are showing the government in their applications. What 108 00:05:43,720 --> 00:05:46,839 Speaker 2: they've created is, like you say, a gene therapy that 109 00:05:46,880 --> 00:05:51,560 Speaker 2: could treat to Lula's disease, but it's also that replicable framework, Katie, 110 00:05:51,560 --> 00:05:53,599 Speaker 2: that you're talking about something that can go on to 111 00:05:53,680 --> 00:05:57,159 Speaker 2: treat lots of other red genetic diseases. And we're talking 112 00:05:57,160 --> 00:06:01,400 Speaker 2: about seven thousand different red disease out there. That's two 113 00:06:01,440 --> 00:06:05,560 Speaker 2: million Australians or more. So that's a large portion of 114 00:06:05,600 --> 00:06:09,920 Speaker 2: our populations. You know, rare is actually many. So what 115 00:06:09,920 --> 00:06:11,640 Speaker 2: we're trying to do is get them to see the 116 00:06:11,760 --> 00:06:15,839 Speaker 2: value in this. You know, rare diseases deserve treatments. There 117 00:06:15,839 --> 00:06:18,839 Speaker 2: are platforms out there to create these. We're proving that 118 00:06:19,480 --> 00:06:22,720 Speaker 2: and if we can just show them the merit, and 119 00:06:22,880 --> 00:06:26,040 Speaker 2: we're doing that now, even by sharing this voice on 120 00:06:26,120 --> 00:06:29,800 Speaker 2: air with you today, I believe they will see that 121 00:06:30,160 --> 00:06:34,279 Speaker 2: and we'll see the benefits go through for our beautiful 122 00:06:34,320 --> 00:06:36,760 Speaker 2: girl and for the children following her. 123 00:06:37,160 --> 00:06:41,799 Speaker 1: Golden In terms of you know, have you had meetings 124 00:06:41,839 --> 00:06:44,279 Speaker 1: with our federal politicians. I know you would have tried 125 00:06:44,400 --> 00:06:47,880 Speaker 1: absolutely everything, but have any of them sat at the 126 00:06:47,960 --> 00:06:50,640 Speaker 1: table with you and heard what you've got to say. 127 00:06:51,880 --> 00:06:57,600 Speaker 2: I have tried to have meetings with state politicians, and 128 00:06:57,760 --> 00:07:01,520 Speaker 2: I have written to our federal Health Minister, the Honorable 129 00:07:01,560 --> 00:07:05,120 Speaker 2: Mark Butler about this. He signs off on these medical 130 00:07:05,160 --> 00:07:08,960 Speaker 2: research future funds, and admittedly, of course there are you know, 131 00:07:09,040 --> 00:07:12,800 Speaker 2: there is a huge body of ethics committees who recommend, 132 00:07:13,200 --> 00:07:16,280 Speaker 2: you know, what he signs off on. But yes, I've 133 00:07:16,360 --> 00:07:20,880 Speaker 2: also spoken to Luke Gosling, who I was a former 134 00:07:20,920 --> 00:07:25,560 Speaker 2: constituent with and he is barracking for us as well. 135 00:07:25,960 --> 00:07:29,320 Speaker 2: He's taking this to Butler's office. We are just, yes, 136 00:07:29,480 --> 00:07:31,680 Speaker 2: we have got all irons in the fire, Katie. We're 137 00:07:31,720 --> 00:07:35,280 Speaker 2: trying everything that we can, and you know it's because 138 00:07:35,960 --> 00:07:40,760 Speaker 2: it's a valid fight and one that's worth fighting. I 139 00:07:40,800 --> 00:07:44,360 Speaker 2: do believe that they are listening. I feel really proud 140 00:07:44,440 --> 00:07:48,000 Speaker 2: that Luke Gosling has got our backs and he's going 141 00:07:48,040 --> 00:07:51,720 Speaker 2: to take it to the minister's office and hopefully in 142 00:07:51,800 --> 00:07:55,560 Speaker 2: time before they sign off on this, this lant that 143 00:07:55,840 --> 00:07:58,720 Speaker 2: literally it's three point eight million dollars. That is the 144 00:07:58,760 --> 00:08:02,040 Speaker 2: difference between us towards the clinical trial for my daughter 145 00:08:02,120 --> 00:08:04,080 Speaker 2: and kids like her or thinking. 146 00:08:05,320 --> 00:08:08,080 Speaker 1: Oh golden like to me, it just seems like, let 147 00:08:08,240 --> 00:08:11,280 Speaker 1: you know, just give it a go, help these kids, 148 00:08:11,600 --> 00:08:14,040 Speaker 1: is what I'm thinking. Obviously, I'm not in charge of 149 00:08:14,080 --> 00:08:16,880 Speaker 1: the purse string so and I'm probably not as fiscally 150 00:08:16,960 --> 00:08:19,480 Speaker 1: responsible as what my husband would like. But when it 151 00:08:19,520 --> 00:08:23,000 Speaker 1: comes to seek children, I think you've got to you know, 152 00:08:23,200 --> 00:08:26,640 Speaker 1: you've got to listen, and you've got to try and help. 153 00:08:27,560 --> 00:08:29,400 Speaker 2: That's right, And you know what, I know that all 154 00:08:29,440 --> 00:08:32,880 Speaker 2: of these politicians have big hearts and very very busy 155 00:08:32,920 --> 00:08:36,640 Speaker 2: schedules as well, and I know that they will feel 156 00:08:36,679 --> 00:08:39,040 Speaker 2: the same way as you. We just need to, like 157 00:08:39,120 --> 00:08:42,080 Speaker 2: you say, get at that table with them, get that 158 00:08:42,160 --> 00:08:45,880 Speaker 2: opportunity to show them the labs where these scientists are 159 00:08:45,880 --> 00:08:50,120 Speaker 2: doing these incredible things and developing these amazing medicines, and 160 00:08:50,240 --> 00:08:53,120 Speaker 2: they too will see and feel like you and I 161 00:08:53,200 --> 00:08:53,679 Speaker 2: do today. 162 00:08:53,840 --> 00:08:57,199 Speaker 1: Katie, Oh Golden, I wish you all the very best. 163 00:08:57,320 --> 00:08:59,600 Speaker 1: Please keep in contact with us, let us know how 164 00:08:59,640 --> 00:09:02,440 Speaker 1: things progressing. You know, if there's a way that you 165 00:09:02,440 --> 00:09:05,480 Speaker 1: think we can help at some point in any way, 166 00:09:05,520 --> 00:09:09,120 Speaker 1: please let us know. Yeah, I you know. My heart 167 00:09:09,200 --> 00:09:11,800 Speaker 1: goes out to you and your beautiful little family. So 168 00:09:11,920 --> 00:09:13,520 Speaker 1: much love and like to you guys. 169 00:09:14,679 --> 00:09:16,600 Speaker 2: Thank you, Katie, thank you, beautiful day. 170 00:09:16,760 --> 00:09:18,120 Speaker 1: You too. We'll talk to you soon.