Latest / Two Doting Dads with Matty J & Ash / #266 Jai Arrow & The Fight For His Family

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#266 Jai Arrow & The Fight For His Family · Two Doting Dads with Matty J & Ash

• 0:15
  Speaker 1: Today's guest is someone who needs very little introduction to
• 0:18
  Speaker 1: the rugby league world.
• 0:20
  Speaker 2: But if you're not familiar with the game.
• 0:21
  Speaker 3: Jai Arrow has had a decade-long NRL career, playing 180
• 0:26
  Speaker 3: games across the Broncos, shout out to the Broncos, Titans
• 0:30
  Speaker 3: and Rabbitohs, representing Queensland 12 times in State of Origin
• 0:34
  Speaker 3: and becoming one of South Sydney's most respected players.
• 0:37
  Speaker 1: But earlier this year, Jai's life changed dramatically when he
• 0:40
  Speaker 1: was diagnosed with Motor Neuron Disease.
• 0:42
  Speaker 4: Or MND.
• 0:43
  Speaker 1: A progressive neurological disease that damages the nerve cells responsible
• 0:47
  Speaker 1: for controlling movement, eventually affecting things like walking, talking, swallowing,
• 0:51
  Speaker 1: and breathing.
• 0:52
  Speaker 3: Since being diagnosed, Jai has stepped away from the NRL.
• 0:55
  Speaker 3: But if you followed his story, you'll know that he's
• 0:57
  Speaker 3: approached his next chapter with the same fight and determination
• 1:01
  Speaker 3: he brought to the footy field.
• 1:02
  Speaker 1: But today we wanted to get to know the bloke
• 1:04
  Speaker 1: behind the player, particularly Jai, the dad, and the husband.
• 1:08
  Speaker 3: So today we're joined by Jai and Berina, or Berry,
• 1:12
  Speaker 3: his wife. And they open up about life since Jai's diagnosis,
• 1:16
  Speaker 3: how it's affected their relationship and what the future looks
• 1:18
  Speaker 3: like for them and their little girl, Isla.
• 1:21
  Speaker 1: It's a really open and honest conversation. We all got
• 1:24
  Speaker 1: a little bit emotional throughout this episode.
• 1:26
  Speaker 3: But it's such an important conversation to have, not only
• 1:29
  Speaker 3: to hear what Jai and Barry are going through, but
• 1:32
  Speaker 3: hopefully to help other families who are facing an MND
• 1:34
  Speaker 3: diagnosis as well.
• 1:36
  Speaker 2: Shall we get into it?
• 1:37
  Speaker 1: Here's Jai and Marina.
• 1:39
  Speaker 3: Welcome back to Three Doting Dads and One Doting Mum.
• 1:42
  Speaker 3: I'm Matty J.
• 1:43
  Speaker 5: I'm Ash.
• 1:44
  Speaker 2: I'm Joy.
• 1:45
  Speaker 5: I'm Barry.
• 1:46
  Speaker 3: And Ayla, your beautiful daughter, has just walked around the corner.
• 1:49
  Speaker 2: She's got, was that banana bread?
• 1:50
  Speaker 3: She's got a nugget of banana bread. Bringing the ghosts.
• 1:54
  Speaker 2: She's so well behaved, I'll be honest. No shit.
• 1:58
  Speaker 1: Credit to you both because if it was my kid,
• 2:01
  Speaker 1: it would be a nightmare.
• 2:02
  Speaker 5: She's well behaved when she's asleep.
• 2:05
  Speaker 2: Yeah.
• 2:05
  Speaker 5: But aside from that, no.
• 2:07
  Speaker 2: And with food in hand.
• 2:09
  Speaker 3: Yeah, yeah.
• 2:10
  Speaker 2: With food in hand.
• 2:10
  Speaker 3: She's got your eyes, Joy, I think.
• 2:12
  Speaker 2: Well, you know, I wasn't watching either.
• 2:15
  Speaker 5: Well, she came out looking like Jai Jr. And I
• 2:18
  Speaker 5: was like, oh, no.
• 2:19
  Speaker 2: Jai Jai. Yeah. I was like, oh, no, poor thing.
• 2:23
  Speaker 4: Even when I saw her come out, I went, yep,
• 2:28
  Speaker 4: no mom.
• 2:29
  Speaker 2: DNA test needed. You knew immediately. She's mine.
• 2:35
  Speaker 3: So if you do hear a baby screaming in the background,
• 2:38
  Speaker 3: you're not going crazy because Ayla is here.
• 2:40
  Speaker 2: It's not your baby either.
• 2:42
  Speaker 3: All the parents listening will be like, is my child awake?
• 2:45
  Speaker 2: What's going on? The triggering noise you're like, is it mine?
• 2:48
  Speaker 5: It's crazy how your own child noise triggers you, but
• 2:51
  Speaker 5: other kids you're like, oh, that's so fine.
• 2:54
  Speaker 2: I'm triggered by all of them.
• 2:55
  Speaker 3: So cute.
• 2:56
  Speaker 2: Yeah, true. Sometimes I'm like, oh, God.
• 2:59
  Speaker 3: I'm going to test your memories here.
• 3:01
  Speaker 2: Yes. Okay.
• 3:02
  Speaker 3: You're going to have to cast your minds back. Jai,
• 3:05
  Speaker 3: do you remember what would be the biggest thing that
• 3:07
  Speaker 3: made you fall in love with Barry?
• 3:09
  Speaker 5: I love this question.
• 3:11
  Speaker 2: Me too.
• 3:12
  Speaker 5: Good wedding prep.
• 3:12
  Speaker 2: I like this.
• 3:13
  Speaker 4: I think for me it's an accumulation of time when
• 3:20
  Speaker 4: you're with someone for a fairly long time even though
• 3:25
  Speaker 4: we haven't really been together that long. I think There's
• 3:31
  Speaker 4: so many things over time where my love grows for her,
• 3:38
  Speaker 4: especially in the time like I'm going through at the moment.
• 3:43
  Speaker 2: Seeing her as.
• 3:45
  Speaker 4: A mum in growth and as a wife where essentially
• 3:51
  Speaker 4: she's really had to step up.
• 3:55
  Speaker 2: I think there's.
• 3:56
  Speaker 4: Not one moment but my love Telling the story where
• 4:05
  Speaker 4: you turned over in bed when we were first starting
• 4:11
  Speaker 4: seeing each other and you're like, I need to tell
• 4:15
  Speaker 4: you something.
• 4:23
  Speaker 5: Hold your breath, I love you.
• 4:31
  Speaker 3: What happened?
• 4:32
  Speaker 5: We were just in bed and we woke up and
• 4:35
  Speaker 5: he was like, oh, you know, I want to.
• 4:37
  Speaker 2: Tell you something.
• 4:42
  Speaker 5: He's like, hold your breath. He told me to specifically
• 4:45
  Speaker 5: hold my breath. He's like, I love you.
• 4:48
  Speaker 2: Oh, something. I love that.
• 4:52
  Speaker 5: He's like, you're going to like what I have to say.
• 4:53
  Speaker 2: Hang on.
• 4:57
  Speaker 3: Why did you say hold your breath? It just felt right.
• 5:03
  Speaker 5: He was like, be prepared. I've got something big to say.
• 5:08
  Speaker 4: You did.
• 5:09
  Speaker 2: I promise.
• 5:10
  Speaker 5: I promise. I remember it.
• 5:12
  Speaker 3: Barry, do you remember when you first met Jai? What
• 5:14
  Speaker 3: was it about him that made you fall in love?
• 5:16
  Speaker 5: I do remember when I first met Ja, I hit
• 5:18
  Speaker 5: a mullet, which I was like, yeah. And I say
• 5:22
  Speaker 5: this story because I was genuinely like, I've never seen
• 5:25
  Speaker 5: one in real life. And I was like, I don't
• 5:27
  Speaker 5: know what to expect. But he was super, super kind,
• 5:30
  Speaker 5: super sweet, made my coffee right, which was important.
• 5:34
  Speaker 2: That's a big one.
• 5:35
  Speaker 4: Big one.
• 5:35
  Speaker 5: And we just had very similar interests outside of rugby.
• 5:40
  Speaker 5: Because I had no idea what rugby... I didn't know
• 5:42
  Speaker 5: there were two different kinds of rugby, by the way.
• 5:44
  Speaker 5: I didn't know the union versus league at the time.
• 5:46
  Speaker 2: There's a good one and a boring one.
• 5:48
  Speaker 5: Yeah.
• 5:48
  Speaker 2: Well, yes.
• 5:49
  Speaker 5: Now I know. But at the time, I had no idea.
• 5:52
  Speaker 5: I just found we had the same interests. We love animals,
• 5:55
  Speaker 5: love dogs. We both had dogs at the time. You know,
• 5:58
  Speaker 5: love coffee, just love chilling. Like both of us have
• 6:01
  Speaker 5: the same nature. So I think that's what really got
• 6:04
  Speaker 5: us connected to begin with. And even now, like going
• 6:08
  Speaker 5: through life, like ups and downs, like we balance each
• 6:11
  Speaker 5: other out very well.
• 6:12
  Speaker 2: Yeah.
• 6:13
  Speaker 6: Yeah.
• 6:13
  Speaker 3: So.
• 6:15
  Speaker 2: You're crazy.
• 6:18
  Speaker 5: I like to use the term chaotic, but that's okay. Yeah,
• 6:22
  Speaker 5: yin and yang.
• 6:23
  Speaker 2: I didn't mean that.
• 6:25
  Speaker 5: No, I know. He also thinks he's funny.
• 6:28
  Speaker 2: He's funny.
• 6:31
  Speaker 5: Which was sort of sweet as well. I thought he
• 6:33
  Speaker 5: was a bit funny too.
• 6:36
  Speaker 2: Thank you.
• 6:36
  Speaker 3: You are.
• 6:37
  Speaker 5: Not as funny as me though.
• 6:39
  Speaker 3: And I think often it's partners who notice something might
• 6:44
  Speaker 3: not be quite right and I think it's normally the
• 6:46
  Speaker 3: other half who are kind of like, oh, you should
• 6:48
  Speaker 3: probably get that checked out. I know Laura's always like,
• 6:50
  Speaker 3: that mole on your arm.
• 6:52
  Speaker 2: Yeah.
• 6:53
  Speaker 6: Then she books me an appointment instead of me booking it.
• 6:55
  Speaker 2: Yeah, yeah, yeah. She always notices first.
• 6:58
  Speaker 3: Did you notice anything yourself with Joe?
• 7:01
  Speaker 5: I noticed he was withdrawing at times, like, He was
• 7:06
  Speaker 5: doing things that I was like, that's not you. Like
• 7:10
  Speaker 5: sitting in the kitchen, listening to Luke Combs, when me
• 7:13
  Speaker 5: and my sister in the living room watching TV, we're like, oh,
• 7:16
  Speaker 5: come watch TV with us. But like he's in his
• 7:19
  Speaker 5: mind would have been thinking there's something going on. And like,
• 7:21
  Speaker 5: I don't know how to express it. And he tried
• 7:24
  Speaker 5: to express it several times. Mind you, he was pissed drunk.
• 7:28
  Speaker 5: He's like, I can't talk. And I'm like, yeah, because
• 7:31
  Speaker 5: you're drunk, you know, but also as a partner, You
• 7:35
  Speaker 5: don't want to think the worst of the worst.
• 7:38
  Speaker 2: Yeah.
• 7:39
  Speaker 5: So I think in those sorts of circumstances, it was
• 7:42
  Speaker 5: really hard for me because I didn't really understand what
• 7:46
  Speaker 5: he was trying to communicate. And I also didn't really
• 7:50
  Speaker 5: know what MND was.
• 7:51
  Speaker 4: I remember saying to him, there's something really wrong with me.
• 7:57
  Speaker 2: And so when he made up.
• 7:59
  Speaker 4: I don't know about something really wrong in my news.
• 8:04
  Speaker 2: I had a few beers.
• 8:07
  Speaker 5: So when he's like, there's something really wrong with me,
• 8:09
  Speaker 5: I'm like, yeah, there is. Yes.
• 8:11
  Speaker 4: And as she said, she was like, you know, I'm like,
• 8:16
  Speaker 4: you're drunk.
• 8:17
  Speaker 2: Don't worry about it.
• 8:19
  Speaker 4: I'm like, no, there is something really, really wrong. I
• 8:25
  Speaker 4: reckon I knew where it was leading in about January,
• 8:31
  Speaker 4: my speech. was starting to be noticeable and people were
• 8:38
  Speaker 4: picking it up on it. But in a way, I
• 8:42
  Speaker 4: had to hide from everyone, you know, media, fans. The
• 8:48
  Speaker 4: club knew what was going on, but I kind of
• 8:53
  Speaker 4: knew where I was heading. But I also had hope
• 8:58
  Speaker 4: that hopefully, look, if something bad I'll figure it out.
• 9:03
  Speaker 4: But from January until May, I do a lot of
• 9:09
  Speaker 4: specific testing. And finally, on May 14th, I was diagnosed.
• 9:19
  Speaker 4: And that was the biggest relief ever. And I've been
• 9:24
  Speaker 4: pretty open about that. But yeah, I thought I knew
• 9:29
  Speaker 4: something in November.
• 9:32
  Speaker 2: And if you want.
• 9:34
  Speaker 4: In January, when we went, funny enough, to an M &
• 9:39
  Speaker 4: A fundraiser.
• 9:41
  Speaker 2: An M & A fundraiser. Yeah, I remember. And when
• 9:47
  Speaker 2: Dominic wrote, he's a neuro.
• 9:50
  Speaker 5: Talking about it.
• 9:51
  Speaker 4: Talking about symptoms. And I remember walking out listening.
• 9:57
  Speaker 2: I went, oh, fuck. I think I have that. So
• 10:02
  Speaker 2: you recognized some of the symptoms. And I went, uh-oh.
• 10:06
  Speaker 4: But also had heart. And didn't tell anyone until about January.
• 10:13
  Speaker 2: I was a physio. He noticed.
• 10:17
  Speaker 5: Hmm.
• 10:17
  Speaker 4: And also talking about my shoulder, which is twitching.
• 10:23
  Speaker 5: Constantly twitching.
• 10:24
  Speaker 2: Constantly, yeah. Oh, yeah, yeah.
• 10:27
  Speaker 5: And it's moved to that side as well now.
• 10:31
  Speaker 3: And that's a standard.
• 10:33
  Speaker 2: Yeah.
• 10:33
  Speaker 4: Starting there and then moving to my muscle.
• 10:39
  Speaker 2: And then now me. Yeah. Yeah.
• 10:43
  Speaker 3: For someone who doesn't have any idea about what it's
• 10:47
  Speaker 3: like having MND day to day, what are the hardest parts?
• 10:51
  Speaker 4: People might think I'm putting on a brave face when
• 10:56
  Speaker 4: I say this, but it hasn't been that hard with
• 11:01
  Speaker 4: the amount of support and it's been crazy. But if
• 11:07
  Speaker 4: I have to pinpoint everything, it's all my speech.
• 11:13
  Speaker 2: One year I've learned.
• 11:14
  Speaker 4: To let go with a lot of things and me
• 11:19
  Speaker 4: being the man that I was until now, I've been
• 11:24
  Speaker 4: able to not be proud enough to not ask for help.
• 11:30
  Speaker 2: I've learned to let that part of me go.
• 11:34
  Speaker 4: And be happy for Marina to help me wash my body,
• 11:41
  Speaker 4: to help me with My clothing, pretty much everything. But
• 11:47
  Speaker 4: the hardest part for me, more than that, my speech.
• 11:51
  Speaker 4: I'm from a guy who was one child.
• 11:57
  Speaker 2: Mind you, I couldn't speak. English anyway.
• 12:01
  Speaker 5: That's why we got along really well. And he said,
• 12:04
  Speaker 5: hold your breath. He wasn't sure how he was going
• 12:06
  Speaker 5: to say it.
• 12:07
  Speaker 4: But to go from that to barely being able to
• 12:12
  Speaker 4: speak has been the most challenging. But I've learned to
• 12:18
  Speaker 4: let it go. And I mean this genuinely. I've never
• 12:23
  Speaker 4: had a better mindset in my life.
• 12:26
  Speaker 2: Yeah.
• 12:27
  Speaker 5: I think also one of the hardest things for him,
• 12:28
  Speaker 5: which he didn't say, but I know it would be
• 12:31
  Speaker 5: up there, is, like, Isla. It's like our daughter, like,
• 12:34
  Speaker 5: being a dad, like, not being able to, you know,
• 12:37
  Speaker 5: hold her as long as he could have before and
• 12:39
  Speaker 5: stuff like that.
• 12:39
  Speaker 2: Yeah, that part. That part is hard.
• 12:43
  Speaker 4: But learning to let go of essentially not being normal
• 12:51
  Speaker 4: and finding ways to try and help where I can
• 12:57
  Speaker 4: One year, I can't do much.
• 13:00
  Speaker 2: But I'm fighting one year.
• 13:04
  Speaker 3: Do you get to have a chance to not think
• 13:06
  Speaker 3: about MND? Or is it something that's with you every
• 13:10
  Speaker 3: hour throughout the day?
• 13:10
  Speaker 2: Well, it makes it a problem.
• 13:13
  Speaker 5: It's been, yeah.
• 13:15
  Speaker 2: But we wanted to do that.
• 13:18
  Speaker 3: Yeah.
• 13:19
  Speaker 5: I think for me specifically, the harder part is... just
• 13:24
  Speaker 5: hearing other people's stories as well. So obviously we're trying
• 13:29
  Speaker 5: to navigate our story and our family's journey with it,
• 13:33
  Speaker 5: but hearing other people's experiences with it. You know, we've
• 13:37
  Speaker 5: got floods of messages of, you know, I know this
• 13:40
  Speaker 5: person who passed away from it and this person and
• 13:42
  Speaker 5: that person and going to fundraisers for it and functions
• 13:46
  Speaker 5: to try to raise awareness and funding for research and
• 13:49
  Speaker 5: advocacy and care within the MND space. And just like,
• 13:54
  Speaker 5: seeing people in wheelchairs and seeing that as a reality
• 13:57
  Speaker 5: of what it is that's very hard it's very hard
• 14:00
  Speaker 5: to digest as well knowing people are struggling but also
• 14:04
  Speaker 5: this is what life is going to look like potentially
• 14:07
  Speaker 5: so that part's quite confronting and it's hard to it's
• 14:10
  Speaker 5: hard to step it's hard to really at the end
• 14:12
  Speaker 5: of the day separate you know the good that we're
• 14:15
  Speaker 5: trying to do with raise awareness with it but then
• 14:17
  Speaker 5: also having to grieve at the same.
• 14:19
  Speaker 3: Time yeah in my head i'm trying to Understand how
• 14:23
  Speaker 3: I would navigate a situation where you're trying to be
• 14:26
  Speaker 3: a parent and at the same time you're dealing with
• 14:29
  Speaker 3: the biggest fight of your life. And how do you
• 14:32
  Speaker 3: jump between trying to make the most of every moment,
• 14:35
  Speaker 3: but also like grieve yourself. How are you guys juggling
• 14:38
  Speaker 3: all of that emotion?
• 14:39
  Speaker 5: I think I'm probably struggling a bit more than he is.
• 14:44
  Speaker 5: I think his personality has always been very, he's always
• 14:48
  Speaker 5: been a very positive person. And he's always been, like
• 14:50
  Speaker 5: he said before, not the one to sort of ask
• 14:52
  Speaker 5: for anything, ask for help, always does things on his own,
• 14:56
  Speaker 5: like get stuff sorted on his own. Whereas now he's
• 14:59
  Speaker 5: sort of had to change that bit, but he's also
• 15:02
  Speaker 5: been extremely positive throughout this whole experience and he's ready
• 15:06
  Speaker 5: to sort of face it head on. Whereas for me,
• 15:09
  Speaker 5: I'm more of a realist. So I think of everything
• 15:12
  Speaker 5: as shit, like this is real, this is happening, what
• 15:16
  Speaker 5: do we do? And sort of go into that panic mode.
• 15:21
  Speaker 5: But the biggest piece of advice that we were given,
• 15:24
  Speaker 5: which to be honest is how we're dealing with it,
• 15:27
  Speaker 5: is be as normal as possible. So at home, like
• 15:31
  Speaker 5: we're still normal. We still talk to each other normally.
• 15:33
  Speaker 5: Like we don't talk to each other about it. We
• 15:37
  Speaker 5: don't talk to each other about it. We still make jokes.
• 15:40
  Speaker 5: We still live life every day, you know, the way
• 15:42
  Speaker 5: that we would before it. At least we try to
• 15:45
  Speaker 5: as much as we can. So obviously some things have changed.
• 15:48
  Speaker 5: like every day, but it is what it is. You
• 15:51
  Speaker 5: either deal with it positively or you let it completely
• 15:54
  Speaker 5: eat you up and that's, that'll kill you faster.
• 15:58
  Speaker 3: Obviously we get a version of, of how you guys
• 16:02
  Speaker 3: are dealing with this. Cause we're, Ash and I are
• 16:03
  Speaker 3: on the sidelines, but I do want to say like,
• 16:06
  Speaker 3: it's like, I loved you as a footballer, Jai. And
• 16:09
  Speaker 3: then now seeing how you guys are dealing with it.
• 16:11
  Speaker 3: It's incredible from our perspective.
• 16:13
  Speaker 2: Yeah, absolutely.
• 16:14
  Speaker 6: And I second that. Like the brave face you guys
• 16:16
  Speaker 6: put on in front of everyone and, talk about it
• 16:19
  Speaker 6: so openly and you've kind of given this persona that
• 16:22
  Speaker 6: you're like okay we understand the situation but we're moving
• 16:25
  Speaker 6: forward in a positive way it's honestly for like Matt's
• 16:28
  Speaker 6: saying for us on the sidelines watching it it's like
• 16:30
  Speaker 6: so noble and we talked about a lot of earlier
• 16:33
  Speaker 6: just some of the symptoms let's call them is there
• 16:36
  Speaker 6: anything that surprised you about some of the symptoms?
• 16:39
  Speaker 4: I kind of knew what everything involved and where potentially
• 16:46
  Speaker 4: it's going to head to But all I'm saying, I'm
• 16:51
  Speaker 4: not saying what I mean. If there's anything that surprised me,
• 16:58
  Speaker 4: not really.
• 16:59
  Speaker 5: I think what was surprising to us from learning more
• 17:04
  Speaker 5: about MND was that it's so different for everyone. And
• 17:09
  Speaker 5: so we were getting a lot of messages on, you know,
• 17:13
  Speaker 5: you should try this and you should try that and...
• 17:16
  Speaker 5: So many different things to kind of look into. It
• 17:20
  Speaker 5: is very, I mean, for anyone going through like any
• 17:23
  Speaker 5: diagnosis and stuff like that, it is so overwhelming because
• 17:26
  Speaker 5: there's medication, there's alternative therapies, there's all these sorts of things.
• 17:32
  Speaker 5: And so that part I think was the most surprising
• 17:36
  Speaker 5: because it's so different for everyone.
• 17:39
  Speaker 2: A thing is.
• 17:42
  Speaker 4: One thing that surprises me about M & A, it's
• 17:47
  Speaker 4: more common than you think. Normally from the neuro, he
• 17:55
  Speaker 4: diagnoses four people a week.
• 17:58
  Speaker 3: Oh, wow.
• 17:59
  Speaker 2: A week?
• 18:00
  Speaker 5: And that's just one neurologist.
• 18:01
  Speaker 2: And that's one neuro.
• 18:02
  Speaker 5: So the average stat is three to four people a
• 18:05
  Speaker 5: day in Australia get diagnosed with M & A.
• 18:07
  Speaker 2: Yeah. So it isn't as common. As you think, man.
• 18:14
  Speaker 4: I think another thing for me that surprised me was
• 18:19
  Speaker 4: the unknown. Every day is so different. Some days, you know,
• 18:26
  Speaker 4: I can be horrible with my speech and then some
• 18:31
  Speaker 4: days I'm completely fine. Not fine, but a much clearer
• 18:41
  Speaker 4: and understand me more.
• 18:44
  Speaker 2: It comes and goes.
• 18:46
  Speaker 4: And depending on how fine I am or what I'm doing.
• 18:53
  Speaker 4: So that was probably the two biggest things.
• 18:57
  Speaker 5: And for someone who's so active before, like a professional
• 19:01
  Speaker 5: athlete going and training every day, putting your body on
• 19:04
  Speaker 5: the line, that's the opposite of what you're supposed to
• 19:06
  Speaker 5: be doing when you've got this disease. You're supposed to
• 19:09
  Speaker 5: be conserving energy, no stress, like making sure your diet
• 19:14
  Speaker 5: intake is like you're gaining weight because it's important that
• 19:17
  Speaker 5: your protein inflammation, all these sorts of things. It's like
• 19:22
  Speaker 5: the opposite, training your body now and your mind to
• 19:24
  Speaker 5: do the exact opposite of what you've been doing for
• 19:27
  Speaker 5: 10 years of your life.
• 19:30
  Speaker 6: Those days you mentioned that you sort of go in
• 19:32
  Speaker 6: and out. The days that you are feeling maybe a
• 19:35
  Speaker 6: bit depleted, is there anything that you guys do together
• 19:39
  Speaker 6: maybe that might pull you out of that a little
• 19:41
  Speaker 6: bit to make you feel like you're back on?
• 19:43
  Speaker 4: To be honest, I just go home and chill out.
• 19:48
  Speaker 4: I haven't made... upset about the diagnosis for months and
• 19:55
  Speaker 4: months now but when i get tired i go home
• 20:00
  Speaker 4: chill with her all up and just zone out completely from.
• 20:06
  Speaker 2: The outside and.
• 20:10
  Speaker 5: I think for us as well, it's been a bit
• 20:12
  Speaker 5: different because it has been so public and we weren't
• 20:15
  Speaker 5: expecting the amount of awareness and support. We genuinely weren't.
• 20:20
  Speaker 5: We had no idea that it would be at the
• 20:23
  Speaker 5: scale that it is now where, you know, Jai has
• 20:26
  Speaker 5: been given the opportunity to continue doing good stuff in
• 20:28
  Speaker 5: that area. But I will say it has been a
• 20:32
  Speaker 5: very different experience for us with that because it's been
• 20:35
  Speaker 5: so public.
• 20:36
  Speaker 4: Yeah, I thought when I came out, I knew there'd
• 20:41
  Speaker 4: be a fair bit of a fuss about it, but
• 20:45
  Speaker 4: not to the extent that it is now. But I'm
• 20:51
  Speaker 4: completely and we are utterly grateful for what has transpired
• 20:59
  Speaker 4: and come from this. And I thought, I mean, I
• 21:03
  Speaker 4: know it's my schedule. For me, I'll have nothing on.
• 21:09
  Speaker 4: My schedule at the moment is fucked. I can imagine.
• 21:15
  Speaker 2: But in a nice way, yeah.
• 21:18
  Speaker 4: And doing all that we have has kept my mind sharp,
• 21:24
  Speaker 4: kept my body moving, and it's.
• 21:28
  Speaker 2: Been full on, but good for me as well. Yeah.
• 21:33
  Speaker 2: Mentally somewhat.
• 21:35
  Speaker 7: Physically and yeah it's easy to sort of just sink
• 21:39
  Speaker 7: into your comfort zone and at home and you know
• 21:42
  Speaker 7: not do anything and salt can do all of that
• 21:46
  Speaker 7: and you know but.
• 21:48
  Speaker 2: Me me me I could never.
• 21:50
  Speaker 4: Do that yeah and I suppose it makes so open
• 21:55
  Speaker 4: and humbling the way it went I'm like well one
• 22:00
  Speaker 4: I'm never back down from a challenge and two I
• 22:06
  Speaker 4: ain't giving in to anything or anyone. So me having
• 22:11
  Speaker 4: the power at the moment to spread the awareness, to
• 22:17
  Speaker 4: give people.
• 22:18
  Speaker 2: With M & E.
• 22:20
  Speaker 4: Hope, I'm like, why would I want to run from
• 22:24
  Speaker 4: that when I can, you know, potentially leave a legacy
• 22:30
  Speaker 4: where others can look back and go, well, my dad did.
• 22:37
  Speaker 2: A lot of good in this world.
• 22:41
  Speaker 3: You talk about Isla being your biggest strength.
• 22:44
  Speaker 2: Yeah.
• 22:45
  Speaker 3: What is it about her that makes you so strong?
• 22:48
  Speaker 2: I hate talking about it. Sorry.
• 22:53
  Speaker 3: Take your time.
• 22:55
  Speaker 2: She's the only one that makes me emotional.
• 22:59
  Speaker 1: And me.
• 23:00
  Speaker 2: Yeah, I know.
• 23:04
  Speaker 4: It's hard, like, seeing her grow up and understand there's
• 23:12
  Speaker 4: going to come a day where I won't be able to.
• 23:16
  Speaker 2: Walk, talk and talk to.
• 23:19
  Speaker 4: Her about what I've done in my career and life.
• 23:26
  Speaker 4: So for me, it's about setting the right example.
• 23:31
  Speaker 2: For her and her.
• 23:36
  Speaker 4: All I want to do is I want her to
• 23:41
  Speaker 4: be proud of what I've done in my life. And
• 23:47
  Speaker 4: I know people will tell her about me and some good,
• 23:53
  Speaker 4: many of them bad. But she is my greatest strength
• 23:59
  Speaker 4: and she always will be.
• 24:01
  Speaker 2: And that's not.
• 24:03
  Speaker 4: Taking away from my wife my family but as you
• 24:08
  Speaker 4: know your children are your wife every night and.
• 24:14
  Speaker 3: You never really know what parent you're going to be
• 24:17
  Speaker 3: until you're in the trenches yes when either came into
• 24:19
  Speaker 3: the world what kind of dad was jai like.
• 24:22
  Speaker 5: Yeah i think every family or parent especially when it's
• 24:25
  Speaker 5: your first kid you're preparing for like what do i
• 24:28
  Speaker 5: want my birth to be like what pram do i
• 24:30
  Speaker 5: get what But you never actually prepare, okay, what kind
• 24:33
  Speaker 5: of parent am I going to be? And Jai was incredible,
• 24:35
  Speaker 5: like so hands-on, just absolutely adored her. I mean, the
• 24:39
  Speaker 5: biggest example is like I was high as a kite
• 24:41
  Speaker 5: for three hours after I gave birth to her and
• 24:43
  Speaker 5: he was bawling his eyes out for three hours. So
• 24:46
  Speaker 5: he was, yeah. And honestly, like she's daddy's girl. She
• 24:50
  Speaker 5: loves Jai.
• 24:52
  Speaker 2: I'm a bit of a crier.
• 24:54
  Speaker 3: So I'm going to ask this question and try not
• 24:56
  Speaker 3: to get upset. And if I do, I apologize.
• 24:59
  Speaker 5: I try not to, sorry.
• 25:01
  Speaker 3: Barry, what do you want to remember about her dad?
• 25:04
  Speaker 5: Um, sorry. Um, his humor, um, his strength and his positivity.
• 25:17
  Speaker 3: Yeah.
• 25:20
  Speaker 5: This is M and D now. This is the perfect
• 25:22
  Speaker 5: timing for it.
• 25:24
  Speaker 2: It's called the M and D laugh.
• 25:26
  Speaker 7: Really?
• 25:26
  Speaker 4: Yeah.
• 25:28
  Speaker 5: It's a thing.
• 25:29
  Speaker 3: It's a thing.
• 25:29
  Speaker 2: You know what?
• 25:30
  Speaker 4: It surprised me. It's a thing where in the most
• 25:35
  Speaker 4: awkward situations, you are first in the laughter. Really?
• 25:41
  Speaker 5: It's the best side effect of the whole. I'll be
• 25:44
  Speaker 5: sobbing and he'll just start laughing and you just stop crying.
• 25:49
  Speaker 2: Two stories.
• 25:51
  Speaker 4: With the diagnosis, the club and myself, Yeah.
• 26:05
  Speaker 5: So obviously with the diagnosis being so fresh at the time,
• 26:09
  Speaker 5: this was in May, the club has been super supportive
• 26:11
  Speaker 5: and got us counseling as a family to navigate grief
• 26:15
  Speaker 5: and navigate what we've just been dealt with. I'm bawling
• 26:19
  Speaker 5: my eyes out in there. This is an in-person session.
• 26:22
  Speaker 5: And he just starts laughing.
• 26:23
  Speaker 2: And....
• 26:25
  Speaker 5: The psychologist, whatever, clinical psychologist, I guess he was, just
• 26:30
  Speaker 5: starts looking at him. And I start looking at him
• 26:34
  Speaker 5: and I'm like, how dare you? Was this the first
• 26:36
  Speaker 5: time you experienced it?
• 26:38
  Speaker 2: Yeah. Not the best place to experience it, I suppose.
• 26:43
  Speaker 5: Professor Kiernan, who was our neurologist for his diagnosis and
• 26:47
  Speaker 5: like we've been on this journey with him since January.
• 26:51
  Speaker 5: I didn't believe him. I was like, you're just being
• 26:53
  Speaker 5: a dickhead.
• 26:54
  Speaker 4: Yeah.
• 26:55
  Speaker 5: I was like, you're just laughing because I'm being serious
• 26:57
  Speaker 5: in therapy. Like, you can't take shit seriously ever. And
• 27:01
  Speaker 5: he's like, no, no, no, it's called an M &
• 27:03
  Speaker 5: D laugh. So I guess that's a good.
• 27:07
  Speaker 2: It's crazy how the brain triggers those sort of things,
• 27:09
  Speaker 2: isn't it? Yeah.
• 27:09
  Speaker 4: And one other time, what has happened many times, more
• 27:15
  Speaker 4: in like serious meetings at sales, but one in particular,
• 27:22
  Speaker 4: my husband's date, And it was halftime, and Cam Murray
• 27:28
  Speaker 4: was addressing everyone for me. Anyway, Cam started talking, and
• 27:37
  Speaker 4: then out of nowhere, I lost it. Mate, started laughing
• 27:43
  Speaker 4: in the.
• 27:44
  Speaker 2: At halftime? In the huddle. And.
• 27:51
  Speaker 4: Careful Graeme was next to me. And he started losing it.
• 27:59
  Speaker 4: And while Cam kept talking, and at the end of it,
• 28:06
  Speaker 4: what he kept saying is, Fuck me, no.
• 28:10
  Speaker 2: I was....
• 28:15
  Speaker 3: Sorry.
• 28:15
  Speaker 2: I was like.
• 28:18
  Speaker 4: But then I went out there and played well, so.
• 28:22
  Speaker 2: They work. You're welcome.
• 28:26
  Speaker 3: One of the unique things about your situation is that
• 28:29
  Speaker 3: you have the opportunity to focus on the legacy, right?
• 28:33
  Speaker 3: And then with Ayla, are there any things at the
• 28:36
  Speaker 3: moment that you've been doing or you are going to
• 28:38
  Speaker 3: plan to do to try and give her those nuggets?
• 28:41
  Speaker 4: Yeah.
• 28:42
  Speaker 5: We were having this chat yesterday. I think for her
• 28:46
  Speaker 5: and for other kids navigating grief within their family unit,
• 28:50
  Speaker 5: you know, like she's not going to know her dad
• 28:52
  Speaker 5: any different. And so one, we want to leave as
• 28:55
  Speaker 5: much about Jai before MND because that's obviously very important.
• 29:01
  Speaker 5: And we want to leave as much of what Jai
• 29:03
  Speaker 5: has done as well.
• 29:05
  Speaker 4: Post.
• 29:06
  Speaker 2: Post.
• 29:07
  Speaker 5: But I think the biggest, yeah. And I think the
• 29:09
  Speaker 5: biggest thing as well is making sure we're doing what
• 29:12
  Speaker 5: we can in that space to help families with children
• 29:18
  Speaker 5: navigating this experience as well. Because she's going to grow up.
• 29:22
  Speaker 5: it's going to impact her in some way. And so
• 29:24
  Speaker 5: how do you explain? And kids are ruthless. Kids will say,
• 29:28
  Speaker 5: why are you wearing that? Why do you smell? Like,
• 29:31
  Speaker 5: go brush your teeth.
• 29:33
  Speaker 2: I've had one night seat. Talk like that.
• 29:37
  Speaker 4: Yeah.
• 29:38
  Speaker 2: Like kids.
• 29:40
  Speaker 6: Her and other kids the tools to actually grow into
• 29:42
  Speaker 6: things and understand how to explain why someone is different.
• 30:00
  Speaker 4: Right?
• 30:00
  Speaker 5: And actually embrace that someone is different and kind of
• 30:03
  Speaker 5: use it as like a superpower. So there are definitely
• 30:07
  Speaker 5: great programs out there for older kids. But I want
• 30:11
  Speaker 5: to start working with her at a very young age
• 30:13
  Speaker 5: to grow her into that skill set.
• 30:17
  Speaker 4: And unfortunately, I can't. Women know my fun. And this
• 30:23
  Speaker 4: one is, can't do anything about it.
• 30:26
  Speaker 2: We might as well, you know, live and.
• 30:30
  Speaker 4: Enjoy life as much as we can.
• 30:35
  Speaker 5: I'm sure there's going to come a day where she's like,
• 30:36
  Speaker 5: I wish daddy could go for a swim with me,
• 30:38
  Speaker 5: you know, or I wish daddy could do this and
• 30:42
  Speaker 5: this and that. And, you know, it's going to be
• 30:44
  Speaker 5: at those times where you're not working on it post-grief, right?
• 30:49
  Speaker 5: You're working on it at an early stage to get
• 30:52
  Speaker 5: kids to understand, I guess you've been dealt with these cards,
• 30:56
  Speaker 5: but how do you make it into a positive thing?
• 30:59
  Speaker 3: I think I'd be, I've tried to put myself in
• 31:02
  Speaker 3: your shoes, right? And I think I'd be so fucking angry.
• 31:05
  Speaker 3: I'd be so fucking angry. But when you say, hey,
• 31:09
  Speaker 3: just get on with it, it's the cards you've been dealt.
• 31:11
  Speaker 3: I'm like, I don't know if I could be there.
• 31:13
  Speaker 2: I'm the same.
• 31:14
  Speaker 6: I listen to you guys talk about it and all
• 31:16
  Speaker 6: the good things that you want to do, especially you, Jo,
• 31:19
  Speaker 6: you're like.
• 31:20
  Speaker 2: Oh, it's what I've been dealt. We're going to get
• 31:21
  Speaker 2: on with it.
• 31:22
  Speaker 6: We're going to enjoy ourselves a bit.
• 31:23
  Speaker 4: Same.
• 31:24
  Speaker 6: I sort of put myself in that situation.
• 31:26
  Speaker 2: I think, yeah, I'd be filthy, but I love the
• 31:28
  Speaker 2: way that you're.
• 31:29
  Speaker 6: Like, look, it is what it is and you said
• 31:31
  Speaker 6: that a few times and that you're focusing on you
• 31:33
  Speaker 6: guys and then also being able to provide support for
• 31:35
  Speaker 6: other families and that itself is a legacy.
• 31:37
  Speaker 5: Well, like the biggest thing is like, with anything that's
• 31:40
  Speaker 5: hard in life, especially something like this, you have two choices.
• 31:45
  Speaker 5: You can.
• 31:47
  Speaker 2: Thank you.
• 31:51
  Speaker 4: See?
• 31:51
  Speaker 2: Great minds. You both can take credit for this one.
• 31:54
  Speaker 5: Life, and as we've learned, life is very short. And
• 31:58
  Speaker 5: things can change in a second. So you either... be
• 32:01
  Speaker 5: positive and live every day in a positive way and
• 32:05
  Speaker 5: don't sweat the small stuff or you hold on to,
• 32:09
  Speaker 5: you know, why, like, why me? Don't get me wrong.
• 32:12
  Speaker 5: There are definitely days, maybe more me than him, where
• 32:15
  Speaker 5: I'm like, why us?
• 32:17
  Speaker 2: Like, why?
• 32:21
  Speaker 5: And it's so easy to get frustrated, but it's harder
• 32:25
  Speaker 5: to put yourself in a position and once you do, start.
• 32:30
  Speaker 2: She's out cold. She's a pro. For those of you
• 32:32
  Speaker 2: at home, Ayla is in Vic's arms. Fast asleep. Vic,
• 32:37
  Speaker 2: well done. Well done, Vic.
• 32:39
  Speaker 3: I get like a flat tyre and I'm like.
• 32:41
  Speaker 2: Why me?
• 32:45
  Speaker 3: And I think it's incredible. And I'm like, surely like
• 32:49
  Speaker 3: behind the scenes you're like fucking.
• 32:51
  Speaker 5: Oh, there are days where I'm like. So just so
• 32:54
  Speaker 5: beyond like little things and it's so easy for it
• 32:57
  Speaker 5: to accumulate and for it to just burst out.
• 32:59
  Speaker 2: Into an emotion. Torplay.
• 33:06
  Speaker 5: No, but it is for him. He's navigating like the
• 33:10
  Speaker 5: fact that he has this disease and trying to like
• 33:13
  Speaker 5: fight it and stay alive. For me, I'm navigating not
• 33:16
  Speaker 5: only that, but having to pretty much be a full-time parent. Like,
• 33:20
  Speaker 5: not that you're always a full-time parent, but.
• 33:23
  Speaker 2: To two.
• 33:24
  Speaker 5: To two now.
• 33:25
  Speaker 4: Yeah.
• 33:26
  Speaker 5: And then also, you know.
• 33:27
  Speaker 2: She's a monster, my ass. Oh, God. Don't tell everyone.
• 33:32
  Speaker 5: Don't tell everyone.
• 33:34
  Speaker 2: No, you ain't. You should get a bidet. You should
• 33:36
  Speaker 2: get a bidet.
• 33:37
  Speaker 5: We are going to get the Toto, the Japanese one.
• 33:40
  Speaker 2: Yeah, if they're listening. I mean one. I mean one.
• 33:47
  Speaker 5: They're amazing.
• 33:48
  Speaker 4: I know.
• 33:48
  Speaker 2: I want one.
• 33:49
  Speaker 3: Ash, you're going to wake the fucking baby. Come on.
• 33:50
  Speaker 2: Oh, fuck.
• 33:51
  Speaker 5: Sorry.
• 33:51
  Speaker 2: Sorry. Sorry.
• 33:54
  Speaker 3: Nothing gets them rolled up like a bidet chat.
• 33:58
  Speaker 5: So do we. Japan was 10 out of 10 for that,
• 34:02
  Speaker 5: like everywhere, like even like the public restrooms.
• 34:04
  Speaker 2: Love it.
• 34:05
  Speaker 5: And they have the little things where you can put
• 34:06
  Speaker 5: your kids in while you're– they're just– the Japanese just.
• 34:10
  Speaker 2: Know what– They've got a dial. They've got toilets dialed. Yeah.
• 34:14
  Speaker 6: Yeah, talking about family, I don't want this to come
• 34:16
  Speaker 6: off the wrong way, but would you consider extending your family?
• 34:21
  Speaker 5: We've had this conversation a lot.
• 34:22
  Speaker 4: Okay.
• 34:24
  Speaker 5: We've spoke to a fertility specialist as well about some
• 34:27
  Speaker 5: of our options. The reality of it is, yes, we
• 34:32
  Speaker 5: would love to, but also that responsibility would be 110%
• 34:36
  Speaker 5: on me. And I said that.
• 34:40
  Speaker 4: I said, if you want to, I'm happy, but you
• 34:46
  Speaker 4: have to understand that you're mostly Well, we're going to
• 34:51
  Speaker 4: have to do majority what you.
• 34:55
  Speaker 2: Are now, so.
• 34:56
  Speaker 5: And I think it would be hard.
• 34:57
  Speaker 4: I don't want to be a burden on her. I
• 35:00
  Speaker 4: want to be easy, smooth sailing, but unfortunately, realistically, it
• 35:08
  Speaker 4: won't be.
• 35:09
  Speaker 5: And we don't have our parents next door where I could.
• 35:11
  Speaker 2: Just drop off the kids, you know? I think I'll
• 35:14
  Speaker 2: turn us off another way. You know what? Hell, look
• 35:19
  Speaker 2: at her over there.
• 35:20
  Speaker 5: You should have seen her for the first eight months.
• 35:24
  Speaker 2: She's an unreal little girl now.
• 35:27
  Speaker 3: What are the moments that you love the most when
• 35:28
  Speaker 3: you spend time with her, Jai?
• 35:30
  Speaker 4: When I walk down the stairs and she just smiles.
• 35:36
  Speaker 5: Oh, yeah.
• 35:36
  Speaker 2: Seeing her smile right up to me.
• 35:40
  Speaker 5: She's a daddy's girl.
• 35:43
  Speaker 4: The man thinks like all morning all she wants is
• 35:48
  Speaker 4: her Oh, God.
• 35:52
  Speaker 2: Yeah, and.
• 35:58
  Speaker 5: She's figured out... She's figured out that the yogurt's migrated
• 36:03
  Speaker 5: into our bar fridge because our fridge broke over the weekend.
• 36:07
  Speaker 5: And now she's going up to the bar fridge and going.
• 36:11
  Speaker 2: She's worked you guys out.
• 36:13
  Speaker 5: Oh, she's incredibly intelligent. Kids are so smart.
• 36:16
  Speaker 2: They are, yeah. It's funny how they, like, pick up
• 36:18
  Speaker 2: those little things.
• 36:21
  Speaker 3: For anyone who's listening and they're thinking, I'd love to
• 36:24
  Speaker 3: support you guys and those who are battling MND, what
• 36:27
  Speaker 3: can they.
• 36:27
  Speaker 2: Do to help out?
• 36:28
  Speaker 5: Yeah, so there's multiple things that people can do and
• 36:31
  Speaker 5: get involved in. Obviously, there's MND Australia. Within MND Australia,
• 36:35
  Speaker 5: there's different state-specific organizations like MND New South Wales, MND Queensland, etc.,
• 36:42
  Speaker 5: I think one of the biggest things is get out
• 36:45
  Speaker 5: there and help volunteer for some of those organizations for
• 36:49
  Speaker 5: people that are struggling to potentially get the help that
• 36:53
  Speaker 5: they need or get the equipment that they need and
• 36:56
  Speaker 5: things like that.
• 36:56
  Speaker 2: Especially for older patients.
• 37:00
  Speaker 4: So I think if you're over the age of 65,
• 37:04
  Speaker 4: you don't get access to NDIS.
• 37:09
  Speaker 5: You go to aged care.
• 37:10
  Speaker 4: So funding for Elderly people living with MND is something
• 37:19
  Speaker 4: that we want to help and try to figure out
• 37:23
  Speaker 4: ways where they can get more help.
• 37:27
  Speaker 5: I think everyone's fixated, and we had this conversation yesterday,
• 37:30
  Speaker 5: everyone's fixated on finding a cure. There's not one magical
• 37:34
  Speaker 5: cure for MND. MND is such a, that's what I
• 37:37
  Speaker 5: said earlier about it being surprising is that There's genetic,
• 37:42
  Speaker 5: and that's only 10% of the population gets that genetic
• 37:46
  Speaker 5: component to it. 90% of the population, it's sporadic. Explain
• 37:50
  Speaker 5: how you got it then, right? There's tons of research
• 37:53
  Speaker 5: going into environmental factors and to what causes it, but
• 37:56
  Speaker 5: also research going into... finding a cure mainly for that
• 38:00
  Speaker 5: genetic pool. And there's not as much research out there
• 38:04
  Speaker 5: or there's not as much conversation about how do we
• 38:07
  Speaker 5: just make people's lives easier whilst they have the disease?
• 38:10
  Speaker 5: Because once you have it, you can't get rid of it.
• 38:13
  Speaker 5: So how can we help them maintain their symptoms, like plateau,
• 38:18
  Speaker 5: live life as long as they can, right?
• 38:20
  Speaker 4: I think a big part of M & A is
• 38:23
  Speaker 4: making your life as easy as as possible. Stress management.
• 38:32
  Speaker 4: Getting the right equipment for people to live their life easier.
• 38:39
  Speaker 4: I know it's hard to do, but we need to
• 38:43
  Speaker 4: figure out a way where everyone living with M &
• 38:48
  Speaker 4: A can essentially allow what's never going to happen, but
• 38:54
  Speaker 4: as stress-free as you can.
• 38:58
  Speaker 5: We've learned that there's not as much care facilities in
• 39:00
  Speaker 5: rural areas. We've learned that the NDIS doesn't help support
• 39:05
  Speaker 5: those with MND over 65 if they're diagnosed after 65,
• 39:08
  Speaker 5: if that's the correct stat. And then there's also advocacy
• 39:14
  Speaker 5: for it in terms of government funding and stuff like that.
• 39:19
  Speaker 5: So if you are listening, the best way to help
• 39:21
  Speaker 5: support is just to go on those pages like MND Australia.
• 39:24
  Speaker 5: They've been doing it for years and years and years.
• 39:26
  Speaker 5: And so- There are volunteer programs, I'm assuming. there are
• 39:30
  Speaker 5: tons of different things where people can get involved in
• 39:33
  Speaker 5: it to me it's also not about just donating because
• 39:36
  Speaker 5: the research is one aspect to it donating your time
• 39:39
  Speaker 5: is a big one helping those that can't really don't
• 39:43
  Speaker 5: have that support network around them as well.
• 39:46
  Speaker 3: I think I was impressed before but looking at how
• 39:50
  Speaker 3: you guys have tackled this, it's incredible. I think the
• 39:53
  Speaker 3: strength you guys have, I know I joke about any
• 39:57
  Speaker 3: adversity that I've had and I lose my shit. For me,
• 40:00
  Speaker 3: that reference point of what strength looks like is the
• 40:02
  Speaker 3: two of you. And I think Ayla is so lucky
• 40:05
  Speaker 3: to have a mum and dad, and fuck, I'm sorry
• 40:06
  Speaker 3: to get upset, a mum and dad who are so strong.
• 40:10
  Speaker 3: And you mentioned, Jai, it's so nice to do these
• 40:12
  Speaker 3: podcasts because it gives her a chance to listen back.
• 40:15
  Speaker 3: If Ayla's older and she's listening back, Oh, stop it.
• 40:19
  Speaker 4: Sorry.
• 40:19
  Speaker 6: You're doing really, really well to get through that question.
• 40:23
  Speaker 2: Thank you.
• 40:23
  Speaker 3: Is there anything you would like to say to Ayla?
• 40:29
  Speaker 2: There is so many things that I can say, but.
• 40:37
  Speaker 4: For me, all that I am on, all I know
• 40:43
  Speaker 4: is that, give.
• 40:46
  Speaker 2: Me a moment, I'll always love her.
• 40:54
  Speaker 5: It's hard.
• 40:54
  Speaker 2: Dad loves you.
• 40:57
  Speaker 5: We're strong, but we're not that strong, guys. Sorry about that.
• 41:00
  Speaker 2: It's only Isla, man.
• 41:02
  Speaker 5: It's everything.
• 41:04
  Speaker 2: It's incredible.
• 41:06
  Speaker 6: And I know how hard it is to leave this
• 41:09
  Speaker 6: message with us and for Isla to look back at,
• 41:11
  Speaker 6: but you're doing an amazing job. And look at her
• 41:14
  Speaker 6: over there.
• 41:15
  Speaker 2: She's like, you're talking about me?
• 41:17
  Speaker 4: Yes, I've had a lot of opportunity to do things
• 41:23
  Speaker 4: that I never thought I'd be able to do, but
• 41:27
  Speaker 4: the most important thing for me at the moment obviously
• 41:33
  Speaker 4: is my family, but second is helping other people, and
• 41:40
  Speaker 4: I'm here to inspire.
• 41:44
  Speaker 2: Thank you so much. Sorry, we were calling you guys out.
• 41:47
  Speaker 5: Thank you.
• 41:49
  Speaker 1: Matt, I will say that was definitely one of the
• 41:52
  Speaker 1: most emotional episodes that we have had. It was amazing
• 41:56
  Speaker 1: to hear all the great things that Jai and his
• 41:58
  Speaker 1: wife are doing within the MND community and also just.
• 42:02
  Speaker 6: The love that they have for their little girl.
• 42:04
  Speaker 3: It hit home, I think, a lot harder having Ayla
• 42:08
  Speaker 3: in the studio here because, you know, you're talking about
• 42:12
  Speaker 3: why you're fighting, who you're doing it for. And to
• 42:15
  Speaker 3: have Ayla in the room as he's saying those words,
• 42:19
  Speaker 3: like I just, I can't even begin to fathom how
• 42:22
  Speaker 3: hard that must be for their family.
• 42:24
  Speaker 1: It's pretty obvious that John and Barina are really passionate
• 42:27
  Speaker 1: about educating people about M & D and how others
• 42:30
  Speaker 1: can help by donating either their time or money. We'll
• 42:33
  Speaker 1: leave heaps of resources and links in the show notes.
• 42:36
  Speaker 3: And Vic, I also want to say well done to
• 42:38
  Speaker 3: you because you were juggling the Not only trying to
• 42:41
  Speaker 3: do all the tech support in the background, but also
• 42:44
  Speaker 3: putting Ayla to sleep.
• 42:46
  Speaker 2: Well done.
• 42:47
  Speaker 5: If you've enjoyed this episode, please leave a review.
• 42:49
  Speaker 2: Maybe you could subscribe.
• 42:51
  Speaker 1: Or you can suggest any other guests that we should have.
• 42:54
  Speaker 3: And don't forget, and Ash, please don't forget.
• 42:56
  Speaker 2: I will never.
• 42:57
  Speaker 3: The most important part of our lives, other than our
• 43:00
  Speaker 3: wives and our children.
• 43:00
  Speaker 2: Oh, good save. I love you guys.
• 43:04
  Speaker 3: Social media accounts.
• 43:05
  Speaker 2: Oh, yeah.
• 43:06
  Speaker 3: For two darling dads. Our other children. There is TikTok,
• 43:11
  Speaker 3: Two Doting Dads. Instagram, Two Doting Dads.
• 43:14
  Speaker 2: YouTube, I think it's Two Doting Dads.
• 43:16
  Speaker 3: Pretty sure it's Two Doting Dads. What else is there?
• 43:18
  Speaker 3: Facebook group, Two Doting Dads.
• 43:20
  Speaker 2: Funny that.
• 43:21
  Speaker 3: If there's ever any doubt, just search Two Doting Dads.
• 43:24
  Speaker 2: There's a website too. There is a website. With new hats.
• 43:27
  Speaker 3: Yes, the hats.
• 43:28
  Speaker 2: We're wearing them right now.
• 43:29
  Speaker 1: You can't see, but you can hear it rustling on
• 43:30
  Speaker 1: the microphone.
• 43:31
  Speaker 2: There it is.
• 43:32
  Speaker 4: Yes.
• 43:32
  Speaker 2: Sounds good to me.
• 43:33
  Speaker 3: A little teaser for you. And we'll see you guys
• 43:35
  Speaker 3: on Wednesday.
• 43:35
  Speaker 2: See ya. Bye.
• 43:36
  Speaker 4: Bye.
• 43:46
  Speaker 3: Two Doting Dads podcast acknowledges the traditional custodians of country
• 43:50
  Speaker 3: throughout Australia and their connections to land, sea and community.
• 43:54
  Speaker 1: We pay our respects to their elders past and present
• 43:56
  Speaker 1: and extend that respect to all Aboriginal and Torres Strait
• 43:59
  Speaker 1: Islander peoples today. This episode was recorded on Gadigal land.