Scott Sullivan: Hi, Mark. Hey, man. Scott Sullivan: I'm Scott. How are you going? Not bad. How are you, mate? Scott Sullivan: Nice to meet you. You too, mate. Yeah. Scott Sullivan: So, these are your kids out
here? Yeah, mate. Scott Sullivan: So you've got Finn, Georgia... And Mia, the small one. Mia, the little girl, yeah...Yeah, with my
wife. ..with your wife. Kelly. Kelly, yeah. Scott Sullivan: Now, Mark, I need some advice
from you. Um, Abbey's six - my little girl - and I'm
probably going to have to try and tell her in the next couple of months. Is there any advice you've got as to how to
try and make that as a positive experience as possible? How do I go about doing it? What do I do? It's probably the hardest thing you'll ever
do in your life. Scott Sullivan: There's no known cause.....there's
no cure. I know what my fate is. Come on, Charlie. Let's see if we can catch her. She's very good. I know exactly what's going to happen. Green aliens, that's right. READS: Andy's going to college any day now. Scott Sullivan: You know, if it had to happen
to someone, you know, thankfully it was me rather than the kids or Sarah. Charles Sullivan: Sometimes I lie awake thinking
about it. I'm 80 years of age. I think "Will I go before Scott? "or Scott,
will he be around when I go?" Then I say "Hey, wouldn't it be great if we
both went together?" TIM NOONAN: Scott Sullivan was born in April
1972, the youngest child of parents Charles and Kath. Kath Sullivan: Scott, as a boy, was a very
happy child. Always smiling, always happy. He just went with the flow. TIM NOONAN: He grew up in Queensland. Loved the beach, his rugby and school. Scott Sullivan: Just a really enjoyable upbringing. TIM NOONAN: But his biggest love is Sarah. They met 15 years ago. Scott Sullivan: Sarah was a friend of a friend
and, yeah, we met in London. TIM NOONAN: Was it love at first sight? Scott Sullivan: There was probably a lot of
alcohol involved, um, through the courtship so, um...but, uh, yeah, as soon as I saw Sarah,
I knew she was a pretty amazing person. TIM NOONAN: Four years later, Scott proposed. Sarah Sullivan: He said would I do him the
honour of becoming his wife? Cheers to our 10-year anniversary. Who'd have thought it, when we met in London? That's right. TIM NOONAN: They have two children, 2-year-old
Charlie... Scott Sullivan: Oh, no! Abbey Sullivan: Drawing a picture. TIM NOONAN:..and 6-year-old Abbey. Abbey Sullivan There's me, there's me, there's
Daddy and there's Charlie. Sarah Sullivan: Can you wave to Daddy? Can you see him out there? Can you see Daddy out there? TIM NOONAN: Scott and his family live in Brisbane
where he's a senior executive with Suncorp Bank. Hi, Jeremy. What about those Springboks, eh? Bit unlucky. Scott Sullivan: I was living the dream, you
know? Had a great job, lived in a very nice house,
my wife's fantastic, two great kids, um, played rugby all my life... Group: Yes! Scott Sullivan: I love rugby, I love all my
rugby mates. Sez, I don't see you clapping. So, really, it was, you know, a dream come
true, you know, I've had such a lovely life. TIM NOONAN: Then, 12 months ago, Scott noticed
weakness in his right hand. At work, he couldn't pour a coffee. Scott thought he'd pulled a muscle. Sarah insisted he see a doctor. TIM NOONAN: Hi, Scott. Scott Sullivan: Oh, G'day, Rob. How are you? Dr Rob Henderson: How do you do? Rob Henderson. Scott Sullivan: Nice to meet you, Rob. Dr Rob Henderson: Come on through. Scott Sullivan: Excellent, thank you. Dr Rob Henderson: How are you feeling today? Scott Sullivan: Oh, not too bad, bit nervous,
but we'll see how we go.So I went to the appointment and, um, it all happened really quickly. Dr Rob Henderson: And we can actually count
the individual motor nerves to give us a better measure than trying to assess your muscle
strength. Scott Sullivan: In a matter of probably about
30-45 minutes, the neurologist said to me that "I think you've got Motor Neurone disease"
which I pretty much knew nothing about. Dr Rob Henderson: We don't have an effective
therapy for motor neurone disease. I hope that that's a situation that's gonna
change so we can't beat Motor Neurone disease at this stage where we lie in 2011. Scott Sullivan: And then he said, um, that
"your life expectancy is 3-5 years" and, um, so that was really, really tough. And then I didn't really know what to do so
I was supposed to go straight to work and obviously, I was in no state to do that so
I sort of let my boss know that "Hey, I need to take today off" then, um, I caught the
bus back to home here and went and sat in the park for about an hour, just to collate
my thoughts, you know - Sarah wasn't expecting me home - and then,
um, so I walked in...Yeah, sat down and said - pretty much had to say "I'm dying". TIM NOONAN: Do you remember the day that he
was diagnosed? Sarah Sullivan: Yeah, clearly. Um, it's etched in my brain. Can't forget it, can't erase that one. I'm pretty good at blocking things out but
I can't get rid of that one. Never seen him like that - but then, he was
worried about me, which is him, so... TIM NOONAN: It's a doctor's job to heal the
sick but every patient Rob Henderson sees with MND will die. Average life expectancy is 27 months. Dr Rob Henderson: For many medical people,
it's the disease they fear most of all. TIM NOONAN: Why is that? Dr Rob Henderson: Because people retain all
of their thinking processes and it's that progressive weakness which leads to such severe
disability and it's relatively rapid and those are the things that really, I think, frighten
people. Scott Sullivan: Here's Nanna and Charlie,
they're here. Yeah, let's go say hello. Kath Sullivan: I can't bear to think of him,
um, not being able to speak, not being able to swallow, not being able to cuddle his children
- who he adores. If it's meant to be, I will have to accept
it. Charles Sullivan: It's one of these things
you don't want to happen but you know it's going to happen. Stacy Neild: Mark, I love you so much. Mark Nield: Love you, Stacy. TIM NOONAN: Brisbane couple Mike and Stacy
Neild married two years ago. Man: By the giving and receiving of rings,
I do now pronounce them husband and wife. You may kiss the bride. TIM NOONAN: One year after their wedding,
Stacy was diagnosed with MND. Stacy is 29. Motor neurones are a series of pathways which
tell our muscles to move. When the disease strikes, those pathways fade
away. A command to move a leg, an arm, or to speak
no longer gets through. Last to go is the ability to breathe. Rob Henderson is also Stacy's doctor. Dr Rob Henderson: I just think it puts perspective
on time, you know, it's just a different, uh, we've all got a certain length of time
on this earth and we've all got to make the most of it,
so, it's just a difference, isn't it? It's so easy to not be making the most of
your all you opportunities, you know? Mark Neild: Yeah. It's really so easy to just be cruising along
and, uh...Yeah, I mean, that's the great thing about still having touch is she can still
feel a hug and she still... Dr Rob Henderson: And you sleep together... Mark Neild: Yeah, yeah. ..in the same bed? Yeah, yep, still sleep in the marriage bed. Yeah, nothing's changed there, yeah. We hold hands a lot still and, you know, we
still, yeah, we kiss a lot and uh, we're still close with each other all the time, which
is positive for both of us. Stacy Neild: Yeah, we're surviving. Mark Neild: You're surviving. Stacy Neild: Yeah. With a lot of work. A constant battle. Mark Neild: It's a constant battle. Scott Sullivan: In the later stages, it can
be very, very tough. You know, it's your body that's failed you
- your mind still stays 100 percent active. TIM NOONAN: I can see there's twitching on
your arm just there, mate. Scott Sullivan: Yeah. The, um, the arms do twitch quite a bit in
my circumstance. It's more just annoying than painful, um,
it is a bit of a constant reminder of what I have. For me, the things I'm struggling with at
the moment are just simple things - doing up my left cufflink, um, you know, changing
Charlie's baby clothes with those little clips and just small, finite things I'm starting
to struggle with. TIM NOONAN: Do you worry about the kids not
knowing their Dad? Sarah Sullivan: No, 'cause everyone will tell
them. He'll be here for a lot longer but, um, just
got to make sure that there's just memories etched in their brain that they'll never forget. The kids...I just catch him watching them
- he doesn't know I'm doing it and I can see it, it's the kids. He knows I'll be fine, he knows his family
will be fine and he knows that everyone will be there for the kids and he should be and
I know that hurts him. That's the worst, it's the kids. TIM NOONAN: If you had a special message,
what would you say to Dad? Abbey Sullivan: Um, I love you to the moon
and back. TIM NOONAN: What's breaking your heart? Scott Sullivan: Um, the kids are... TIM NOONAN: They don't know yet, though, do
they? Scott Sullivan: Yeah, so that's going to be
a very tough conversation. yeah, I mean, how do you tell your daughter
that you're dying? TIM NOONAN: Abbey is six. How much do you love him? Abbey Sullivan: This much. TIM NOONAN: How much? Abbey Sullivan: This much. TIM NOONAN: This much? And whenever he can... Scott Sullivan: Alright, Abbey, this is your
first driving lesson from your dad. TIM NOONAN: ..Scott is recording video messages
for Abbey to play as she grows up. Scott Sullivan: Hi, Abbey, it's dad here. Now, I'm going to give you some advice on
boys and listen very, very carefully, OK? All the boys out there, they're bad news,
alright? So you have to be very, very picky and choosy
and make sure you find the right guy. TIM NOONAN: Charlie, his son, is also getting
instructions. Scott Sullivan: Alright, Charlie, Daddy's
now going to show you how to shave so don't rush into this, because once you start shaving,
then you'll never stop - you'll be shaving for the rest of your life. TIM NOONAN: While Scott can still walk, he's
running. After his diagnosis, he started training for
the Gold Coast half-marathon. One goal was to finish but the real goal was
to raise as much money as possible for support and to research the disease that's killing
him and 12 Australians every week. Scott Sullivan: You know, just wanted to do
something which adds a bit of value to the world and give something back. With his mates beside him, he never faltered. Sarah Sullivan: Watching him come round that
corner, was just - my heart was just in my mouth and I had to look away so I didn't cry. I think I did cry. TIM NOONAN: Scott has raised $380,000, and
the money is still coming in. Two weeks ago in Brisbane, in recognition
of his efforts, Scott was awarded the Pride of Australia medal for courage. Sarah Sullivan: I'm so proud of him. Because everything he's doing at the moment
is about... Someone else. TIM NOONAN: Someone else. Sarah Sullivan: It is, and that just shows
you what he's about. He set this foundation up within a couple
of months of finding out his diagnosis, but it wasn't about him - it was about helping
other people that are in a way worse situation. Kath Sullivan: We gather together to pray
through the intercession of Mary MacKilliop for the healing of Scott Sullivan, suffering
from Motor neurone disease. I couldn't face up to this without my faith. I just, um, I just truly believe Scott will
be saved - that's what keeps me going. I'll never give up hope. Never. TIM NOONAN: It's the most baffling of diseases
- no known cause, and no cure. But now, there may finally be hope - a new
trial of a powerful new drug. Scott is one of 800 people worldwide who've
been accepted on the trial. Half will be given placebos. Dr Rob Henderson: It's exciting for motor
neurone disease - that's what's given us all a little lift in energy this year is this
clinical trial. TIM NOONAN: It must be so frustrating not
knowing whether or not you're taking the real drug or you're taking the fake drug. Scott Sullivan: Yeah, it's very frustrating. I'd love to know whether I'm on the real one
or the fake one but at the end of the day, I'm lucky to be on any sort of trial at all. TIM NOONAN: Do you believe the impossible
is possible? Sarah Sullivan: Usually, I would. Unfortunately, with this disease, I can't
let myself have false hope but what I'm hoping is he'll just stay as he is now - things won't
get worse and he'll be one of those strange cases that he'll just have these little symptoms
and things won't get worse. Scott Sullivan: Good morning! Scott Sullivan: Charlie's been waiting for
you! TIM NOONAN: This is a tough question but when
it comes to the point when you can't eat and you can't breathe, have you considered taking
your own life? Scott Sullivan: Absolutely, yeah, absolutely. So, in a perfect world, I'd love the opportunity
to pull up stumps when I'm ready but that's, ah, that's problematic in the current world. TIM NOONAN: He said that he'd like to leave
with dignity. Is that something that you'd like to support? Scott Sullivan: Absolutely. Abbey: And now they're trying to teach her
everything. Is her name Mariposa? No, Ares. Scott Sullivan: Hi, sweetheart. Now, darling, listen to Mummy and Daddy. We've got something very, very important to
tell you, OK? Scott Sullivan: I know what my fate is, um,
I've accepted it. I know exactly what's going to happen. Scott Sullivan: Now, unfortunately, Daddy's
going to be getting a little bit weaker and weaker, OK, over the next couple of years. Scott Sullivan: I know I'm going to be paralysed,
I'm going to be in a wheelchair and, um, you know, and I'm going to lose my speech. Abbey sullivan: Is that true? Scott Sullivan: It is, darling, it is true. it is true, sweetheart. So, when you know of those things, um, once
you accept it, yeah, really don't afraid of anything, to be honest. TIM NOONAN: How'd she go? Scott Sullivan: Ah, pretty good, yeah. So, yeah, um, you know, she's a tough kid,
so, be alright. But, uh, yeah, she asked "is it true?". TIM NOONAN: What else did she ask? Scott Sullivan: Um...Oh, why did it happen
to me, and, uh, asked whether I can tear a piece of paper - I probably can't. TIM NOONAN: Are you OK? Scott Sullivan: Yeah, fine.
