- [Interviewer] Ryan, how old are you? - Eight. - [Interviewer] Connor, how old are you? - 11. - [Interviewer] What's it
like to have a younger brother who's taller than you? - It doesn't matter cause like you'll be tall one day too. - [Interviewer] When somebody
meets you for the first time, what do you hope they think? - That I'm nice, friendly, and kind. - [Interviewer] Why is
that important to you? - Cause like that's what you have to be to like have a friend. - I have a rare condition too. That we'll only be talking. You may notice that
only half my face works. - [Interviewer] Yes, I did notice. - Yeah. - [Interviewer] What is that? - So I have a small little
thing called a facial nerve schwannoma which is a
tumor, a benign tumor that's on my facial
nerve in behind my ear. - [Interviewer] Did that
put you in a unique position to guide Connor through his rare syndrome? - No, because mine isn't life threatening. It's not a disease where the people that are afflicted by
it look any different. So people see my son and think
that he's just a normal kid when he really isn't. - [Interviewer] What's it like to be you? - It's like to be having Barth syndrome and not being as strong as
everyone else in your class and being short. - [Interviewer] What are
some of the complications of Barth syndrome that
are hard to talk about in front of Connor? - Life expectancy. That's difficult. - [Interviewer] If you had
one wish, what would it be? - To never go to school again. - [Interviewer] Why
would that be your wish? - Cause it's just boring
and I would rather watch TV. - One of the biggest
problems with Barth syndrome is that little boys that
have it look so normal and no one would ever
understand that inside there's such a deadly disease living. - [Interviewer] What's it
like to have a younger brother who looks up to you? - Sometimes they can be annoying, but sometimes they can also be nice. - We get in fights
because sometimes Connor just wants to annoy me
cause he's the older one. - [Interviewer] So you
annoy him on purpose? You annoy him on purpose sometimes? - Mm-hmm. - [Interviewer] What do you do? - I just tell him to get out of here. - [Interviewer] What do you
think when he says that? - I know that he is
just trying to annoy me and I try not to get really angry. - [Interviewer] Even when
you guys are arguing, are you still brothers
that love each other? - Yes.
- Mm-hmm. - [Interviewer] How do you know? - Because no matter how
much we argue, the next day or even the next week, we are always laughing together again. - [Interviewer] You
said that Barth syndrome is life threatening, so I'm assuming this is something
you all actively discuss? - We do. We do. Yes. - [Interviewer] What do you tell him? - Well, we tell him that it's important for him to continue to
take his medications and to recognize when
something might not feel right inside of him. For instance, he can't tolerate high heat, so in days today where it's
90 plus degrees outside he wouldn't be allowed to
really go outside too much. The heat could overcome him. - [Interviewer] What is Barth syndrome? - It's a disease where
like it causes your heart and you have to take medicine. - [Interviewer] What
does it do to your heart? - It's small and it could
have problems at any time. - [Interviewer] Barth
syndrome is a ultra rare, X-linked metabolic disease. It's genetically caused, X
linked refers to the fact that it only affects boys. It's ultra rare. And basically what that means is that people with Barth syndrome, the cells in their bodies, the mitochondria in their cells is damaged and doesn't create energy or allow them to enjoy any sort of endurance physically and that affects all the
muscles in their bodies. The largest muscle in
your body is your heart. So children with Barth syndrome
almost 100% of the time have heart disease. So Connor suffers from heart disease, dilated cardiomyopathy. - [Interviewer] Does Connor ever teach you about Barth syndrome? - Yeah, because sometimes I'm
a little too rough with him and he always reminds me that he can't do everything that I do. - [Interviewer] What do
you tell him, Connor? - Just like take it easy a little. - [Interviewer] Do you
have to take special care of your heart? - Mm-hmm. - [Interviewer] What do
you do to take special care of your heart? - Like I go to the hospital every year. - We've been open with
him about the symptoms. He still isn't quite mature enough to be able to really articulate
those verbally very well. So I think he's got a pretty good idea even though he can't articulate
it, what the symptoms are but we don't talk too much
about life expectancy, which is definitely shorter. - [Interviewer] When did
you first start to realize your brother has Barth syndrome? - Well, when I was a baby, of course, I didn't really get it. But when I grew older, I
realized that he was different and he couldn't do
everything that I could do. - [Interviewer] What's your
favorite thing about your mom? - That she made me. - That's it? I made you, that's all? That was the easy part. - [Interviewer] How
would you describe Connor to somebody who doesn't know him? - He's very shy at first, but he has a very old
soul, funny personality. He's quirky in a good way. - [Interviewer] If you
could send a message to every adult in the
world, what would you say? - Be nice to your kids. - [Interviewer] What can adults
do to be nice to their kids? - Buy them whatever they want. - [Interviewer] What do you want? - Video games. - [Interviewer] What is
the most important thing for others to understand
about Barth syndrome? - I think primarily that it
just really drains his energy. So a lot of times when you may think... I never want anyone
accusing him of being lazy because it's not a laziness thing. It's just that he can't physically do what you're asking of him. - [Interviewer] Is it tough
for people to understand that because it's not entirely
physically visible? - Yeah. It is, a lot of people
unless they can harken back to their biology days in school don't really know what
mitochondria are, what they do or how they could be
affected by a disease. And so it's hard for them
to kind of understand. And even his friends it'll
be like, why are you so slow? Or you can't keep up or what's going on? So as he's gotten older,
he's had to learn how to tell some of his good buddies what's going on so that they kind of understand
and not to make fun of him cause they don't make fun of him, but tried him for not
being able to keep up. - There's another thing
that people don't ever see and it's Connor's food diversions. He has really a lot of
problems with eating. He's very rarely hungry. So he's almost 12 and he
weighs about 45 pounds. So he's recently the size
of maybe a boy half his age and we can't get him to eat
cause he's just not hungry. - [Interviewer] What
is school like for you? - Very boring. And it's just not fun. - [Interviewer] Why not? - Cause you have to learn
and it's really hard - Thinking actually takes a lot of energy. And so school's hard for him
just to get through the day. A lot of boys with Barth syndrome don't even go to school full time. So he is able to handle it full time although he does get tired sometimes. Yeah. - [Interviewer] Can you describe what is happening in the body when a person with Barth syndrome does not have the energy to do something? - Kind of, as I said,
it's a metabolic disease and I'm not a scientist
or a research person, but basically the cells in
Connor's body are damaged and inside each of the
cells and all of our body there's a thing called the mitochondria which is basically a
circular piece of energy that all of them put together
allows you to have movement and energy and endurance. And they build muscle. And the mitochondria, the chain, every cell inside of Connor's
body is basically broken and that doesn't spin
around and create the energy the way that it's supposed to. - Sometimes I like to go outside and me and Connor like to play
on the trampoline a little and I run all the way to the trampoline. And sometimes I realize that
Connor can't run as fast as me. So I go back and help him. - [Interviewer] What are you thinking when something like that happens and your brother's running ahead of you and you can't keep up? - Just take your time cause
you know you'll be there. - [Interviewer] What's
your favorite thing to do? - Play baseball. - There are things that we can't do that other families can do. Connor mentioned earlier that
he likes to play baseball, but he likes to play baseball
in the driveway with me hitting a whiffle ball. Connor can't play organized sports. So we don't go to lacrosse
games on Saturday mornings or soccer games on Saturday mornings. We haven't been able to do that. So that's something that
he doesn't able to do. And I guess, like you
said the question was, what do I want other people to know is that there's never a
single day that goes by where we aren't affected by
it in some way or another. - [Interviewer] What did you think when you first learned
about Barth syndrome? - I thought when my parents
told me it was very unique and only about 300 people
in the world had it. And I thought that that was not a lot compared to 7 billion people. So I thought it was really unique and my brother was just
very unlucky to have it. - [Interviewer] Do you want other people to know about Barth syndrome? - Yeah. - [Interviewer] Why? - Because the more people know about it, more scientists will know about
it and try and get a cure. - [Interviewer] What's the best thing about having a brother? - That you can play with him. - [Interviewer] What's the worst thing about having a brother? - He sometimes annoys you and sometimes he can just
do his annoying singing and it's just really annoying. So I tell him to go away. - I do not sing and it is
certainly not annoying. - Yes, you do. - No, I don't. No, I didn't. - Yes, you did. You were singing in the bathroom. - No, I wasn't. - [Interviewer] So right
now you guys are arguing, but you still love each other? - Yes. - Yes. - [Interviewer] What does it
feel like to love a brother while you're arguing? - Well, at that moment we probably feel like we don't
like each other that much, but then after maybe a
few days or just one day, we'll forget about it and then
we'll beat brothers again. - [Interviewer] How does Barth
syndrome impact the heart? - The heart's a muscle, and so just like it affects
every other muscle on the body. The heart doesn't function, it doesn't squeeze as efficiently. The blood flow isn't always
as good as it should be. And the left ventricle can
be dilated, can be larger. - He also has neutropenia,
which is a symptom that means that he has very
low white blood cell counts. So he's unable to fight
off bacterial infections. So we have to be very careful about him catching
something like pneumonia and sort of bacterial infection can be life threatening for him. - [Interviewer] What's your favorite thing about Connor, Ryan? - He's always open to play with me and he is always there when I need him. - [Interviewer] What kind of
stuff does he help you with? - He offers to help me
with my homework a lot. - [Interviewer] Why do you
like to help your brother with homework? - Cause it's easy. - [Interviewer] I thought you
didn't like school though. - Well, second grade's easy. - He doesn't get invited to all the things that all the kids get to do. He doesn't get to go to
paintball, birthday parties or he can't go to Sky Zone
and jump in the trampolines like all the other boys. But when one of his friends
is playing baseball, a couple of their parents
have picked him up and taken him to the
game to let him watch. And so we're very lucky
and we're very fortunate, we've got a lot of great
people in this community that I think understand Barth syndrome as much as they probably need to. I wouldn't expect anybody
to understand what happens in our home on Tuesday
night at six o'clock, I don't know what happens in their homes. They might have challenges
that I don't know about happening in their homes, I have no complaints about our community. - [Interviewer] What are
some things you have to do because of Barth syndrome? - Take medicine and take shots and get blood work done and
go to the hospital more. - [Interviewer] What is
the most important thing you hope others understand
about Barth syndrome? - That it is a deadly disease and that we're never, ever
completely comfortable that something isn't
gonna happen to Connor. Mostly right now his
heart is in good shape but his cardiac problems could
really present a problem. The last couple of boys that
we've lost to the syndrome have died of sudden arrhythmias and just basically had problems
with their heart completely. There was no symptoms like
preexisting thing that, well, there was a preexisting thing but there was no sign that
there was gonna be a problem. So I think that would be the thing that I would probably if I was
gonna share with most people that we're always nervous that something's going to happen to him. - [Interviewer] Will
you be close with Ryan when you two are adults? - Mm-hmm. - Yeah. - [Interviewer] What kind of relationship will you have then? - We'll be brothers and
we'll really like each other, certainly more than we do right now. - [Interviewer] How much do
you like each other right now? - Seven out of 10. - [Interviewer] Is there anything else you wanna say about your dad? - He'll always play with you.
