- Are you ready?
- Yeah! - For your big, awesome interview? (Bess laughs) This is gonna be fun. - Yeah. (laughs) - [Chris] Who is this? - My mom. - Hi baby. (laughs)
- Hi. - [Chris] Tell me about your mom. - 'Cause I happy about my mom. - I know you are. Can you tell him about mom? - My mom is so cute. - You're cute too. - All right, my first question for you- - Okay.
- And it's a big, important question, so let's
put on our listening ears. - Okay.
- Dah dah. - Dah dah.
- Dah dah. - Dah dah.
- Did you put on both your listening ears?
- Yeah. - Okay, mine are on too. This first question, do
you wanna be friends? - (gasps) Yeah! - Yes!
- Yeah! (both celebrating) - [Chris] Tell me about Bess. - Bess is my little
sweetheart, that's for sure. She's my buddy, huh? Yep, we like to go shopping together- - And be besties together- - Besties together and everywhere we go, she
makes a friend. (laughs) - We like friends to be
best friends forever. You, Chris, and me, you're
my best friend forever. And we laugh and play together. - [Chris] What's it like
to make a new best friend? - 'Cause we like to play together! - [Chris] What is it like
to be brother, sister? - I like playing tag. - [Chris] What do you think, Rogue? - Playing with my sister. - And we love Rogue. Aw. (laughs) Aw, Rogue. - [Chris] Why do you love Rogue? - Because he's my best friend forever. (Rogue hums)
(Bess laughs) - Bess was a miracle baby for us. We were together nine
years before she was born. - Yeah.
- And then, we didn't think we'd be
able to have another child and Rogue was such an
amazing surprise to us. And it was especially exciting for us because we knew that Bess
wouldn't be alone in the world and that she would have a sibling. And then Rogue came
along and we didn't wanna put that expectation on his shoulders to be a super supportive brother. That's a lot for anybody, but I mean, they get along so well and
they're the best of friends and that means the world to us as parents, just knowing that they've got
that support for each other, and love. - My favorite thing of my
brother is makes me happy. - [Chris] What does he
do that makes you happy? - He likes to tickle with me. (laughs) And laugh and play together. - [Chris] Rogue, what's your favorite thing about Bess? - To play dinosaurs with her. - [Chris] How do you play dinosaurs? - You just stand up and stomp, stomp! And roar!
(Rogue roars) Like a dinosaur.
(Rogue roaring) Roar!
(Rogue roaring) - Now I have this screen
right here, tah dah! - Tah dah! (laughs) - And we can see ourselves.
- Yeah. - How do you feel when you see yourself? - Happy. - Why do you feel happy
when you see yourself? - Because I like seeing the screen and wave at each other.
- Hi. - Hey!
- How are you? - (laughs) This is our vlog. - [Chris] William's
Syndrome is often known as the disorder that makes people friendly. Would you say that's correct? - Absolutely, absolutely. She is friendly all the time. Bess could be friends with anybody, and I love it 'cause we go out
to eat and next thing I know, people are inviting her to
join their table. (laughs) - I like happy. And excited. Not frustrated or mad. - [Chris] Do you ever
feel frustrated or mad? - No, just happy. - [Chris] What's it like to be happy? - 'Cause we like to be happy! - [Chris] Do you and
your sister ever argue? (both laugh) - Oh, that's funny. - [Chris] What do you and
Rogue argue about sometimes? - We just laugh and play together. And we can roll around. - Do you sometimes feel excited? - Oh yeah. - What does it feel like to be excited? - 'Cause we like to silly,
like (makes silly sounds) (both making silly sounds) - [Chris] I have a question for you. - Huh? - [Chris] If you do feel
frustrated, what do you do? - Just calm down. One, two, three, four. - [Chris] Did somebody teach
you how to count and breath? - Yeah. - [Chris] Does that help? - Yeah, that makes me calm down. - [Chris] I'm really happy
that you know how to calm down. - Yeah, you just take a
deep breath, like calm down. That makes me so proud. That makes me proud. - [Chris] Are you proud
to know how to calm down? - Yeah. - [Chris] You should be, that's
a really smart thing you do. - I'm proud of you. - [Chris] I'm proud of you. - Aw, thanks. We love skipping together. - [Rogue] Skip skip skip skip skip- ♪ Skip skip ♪ - Skip skip skip skip-
- Skip! - Yeah, you guys like
to play a lot together and that's important 'cause it's hard, and with William's
Syndrome, as they get older, it's hard for them to make new friends and so to have a brother she
can come home to, (laughs) and play with, it makes it nice, huh? - Yeah, and it makes me
laugh, I'm like, "Boom!" - Boom.
(Bess laughs) - [Chris] Is it easy for her to relate to people a bit younger? - A bit younger or with adults, you know? And so her age group,
sometimes it's tough. Huh Bess?
- Yeah. - Yeah, that's okay, that's
a part of growing up, huh? Yeah. (laughs) - And we play Rock, Paper, Scissors. Ready? - [Together] Rock, paper, scissors, shoot. - I got you.
- No! (laughs) - I cut your paper.
- Let's do it again! - I cut your paper.
- Let's do it again. - [Together] Rock, paper, scissors, shoot! - I cut your paper, I cut your paper. - Ouch, you'll never get me and my paper! - I ripped your paper off.
- Oh no! - [Chris] What grade are you in? - Second. Do you remember my mom says? - [Chris] I do remember that. What's your favorite thing
about the second grade? - My favorite second
grade is my best friends. - What do you do with your best
friends in the second grade? - I was riding a bike, I
did so good riding a bike. - [Chris] You rode a bike? - Yeah, 'cause it's not tricky. - Yeah, but it can be complicated because not everybody's a friend and so we have to teach
her about, you know, making sure Mommy and Daddy are close by, or people we trust. We learned about, who do we trust, Bess? Who are safe people? - Like my friends? - Your friends, uh huh. - And Mr. Chris are safe to me. - Yeah, yeah, exactly, mmhmm. - What would you like
to say to all the people who are watching this video? - Hi. - Hi everyone.
- Hey. - Do you like saying hi to people? - Hey.
- Hey, hey hey hey hey, hey hey hey hey hey.
- Hey. - How do you hope that
people watching this feel? - Happy. - What can they do to
make themselves happy? - Because they're laughing. - Should we make them laugh? - Yeah.
- All right, let's make them laugh. (pair making silly sounds) What is it like to have a child who does have that authentic
joy and trust in people, but have to teach them that
not everybody deserves that? - That's hard 'cause you don't wanna
have to teach your child that the world's not always a nice place, and that is hard, and
so, we just work together to try to make the world a better place. (Bess sneezes)
Bless you. (laughs) - I have sneezers. - [Chris] Is the world a
bad place or a good place? - A good place. - [Chris] Why is it a good place? - Because it's not bad. - [Chris] What's the best
thing about the world? - About Earth around us. We live on Earth, not Jupiter 'cause we don't live in Jupiter. - [Chris] That is true. - Yeah, because I don't
live in Jupiter or Mars. And do you know what, I don't
live in the sun or moon, I like living on Earth. - [Chris] Earth is the best. - Yeah! - [Chris] It's a beautiful place. - Yeah, such a beautiful place. - It can definitely be complicated 'cause we have to learn about
stranger danger, huh Bess? - Yeah.
- Not everybody's safe. We'd like the world to be
that way, but it's not. - Yeah, and angels keep me safe. What do you like about Earth or Jupiter? - That's a really good question. I like all of the nice people. - Oh, that's nice. - It is nice, and the Earth
has lots of beautiful places. - Yeah, beautiful people and beautiful communities in the house. - I agree with you, and it
has beaches, it has mountains. - And can beaches. - And lakes.
- And lakes. Or grandpas or papas or
teachers, like Chris. - Yeah, I am a teacher, and you're right, it has great family, it has great people, the world is a good place. - Yeah, like me and you, Vlog! - There's so many cool people out there. - Yeah, like look, there's
vlog on the screen. - There is a vlog on our screen. - Hi vlog!
- Hi vlog. - Wait, thanks for watching, bye! Don't forget to subscribe, bye! - You're a really good YouTuber. - Yeah. - [Chris] Has your mom taught
you about William's Syndrome? - Mmhmm. - That video that you can interview people like William's Syndrome. - You've watched Chris'
videos about your friends with William's Syndrome-
- Yeah. - And that really helped you, didn't it? - You are on YouTube. - Mmhmm, and that helped you learn that there's kids just like you, huh? - Yeah. - [Chris] Did that make her happy? - Makes her really happy, really happy, and we've recently started talking more about William's Syndrome 'cause you go to the doctor a lot, huh? - Yeah.
- Yeah, yeah, and we just say they study you 'cause you're so rare and amazing. Mmhmm.
- What is William's Syndrome? - William's Syndrome is
a rare genetic deletion, it happens randomly at conception, it's not passed down from parent to child, although Bess has a 50/50
chance of passing it down 'cause she already has the deletion. And it affects mainly the heart. It can affect other parts of the body and they're just the sweetest
kids in the whole wide world. The cool thing about William's Syndrome is when we get our kids all together, you can tell they have a
lot of facial similarities. So they'll have the adorable
little pixie noses, we call it, and a lot of her girlfriends will have this gorgeous hair too, and you have a lacy pattern in your eyes. Uh huh.
- Yeah. - Mmhmm.
- And angels put my fairy dust in- - Fairy dust in her eyes,
that's what she calls it, her, mmhmm, they put the
fairy dust in your eyes is what you say?
- Yeah. And I like honey mustard. Do you like jalapeno sauce? - [Chris] I do. - But I don't like
jalapeno or flaming hot. - [Chris] Is it too spicy? - Yeah, and it's like
breathing fire! (exhales) - [Chris] Ah, you got me with fire! - I'll use the ice power, boop. (exhales) - [Chris] Oh, thank you for
saving me from the fire. - Yeah. - [Chris] But now I'm
getting kind of cold. - What do you like about cold? - [Chris] I like snow, we
can build snowmen together. - Yeah! Like I can do some power snow! - [Chris] How do you feel when you sit close to your brother? - Happy a lot. Happy a lot and love with him. - [Chris] Rogue, does Bess
like to give you hugs? - Yes. I love to give her hugs too. - [Chris] How do you feel when
you give your sister a hug? - Happy. - And we're all the happies! Aw. - [Chris] What's your
favorite thing about hugs? - My favorite thing
about hugs with my mom. - Yeah, 'cause what do you
like about hugs, though? What do they make you feel? - Love.
- Love, just love. Yeah, we're big on love, huh? (laughs) - [Chris] Does Bess experience love differently than other people? - I think she does. I think she feels it at a
deeper level than some people. Bess can see somebody that's
going through a hard time and instantly be really
emotional about it, or another part of William's Syndrome that's really kind of cool is with music, she can hear certain notes or tones and the next thing I know, she's in tears, and is having an emotional response to it. So she can really feel what the composer was trying to get across and, huh? You feel deeply, don't you? - Yeah, and when people like
will have William's Syndrome, community, and then that people like Mom and Dad and you guys. - Yeah, it's good to have a good supportive community around you, huh?
- Yeah. (laughs) - [Chris] What is it
like to have a brother who's also your best friend forever? - Because he's my buddy! Do you have a beard? - [Chris] I do have a beard. - Awesome! You look like daddy's
hair, that's the same. - [Chris] What's your
favorite thing about Bess? - Oh, she's just always fun, goofy, I think she's really brave for all that she has to go through. Yeah, we just like to have
fun together and be goofy. - Can you show Chris the daddy face? That's a daddy serious face. (laughs) - [Chris] Does Bess like to be goofy? - Oh yeah, all the time. (Bess hollers) We're always silly together, huh? - Yeah. - You like having goofy dance parties? - Yeah. (hollers)
(dad laughs) - Now I have a few serious questions, then we can be silly again. - Okay.
- All right, I'm gonna put on my serious face, mm. Is it easy or hard to be serious? - Easy. - Good, you're really
good at being serious. Now here's my question.
- Okay. - What is your favorite
thing about your family? - My favorite thing about my family is to make (burps) food. I'm burping.
- Oh that's okay, everybody burps sometimes.
- Yeah, like sneezing or
hiccuping. (mimics hiccup) - Yeah, people sneeze and hiccup too. (pair mimicking hiccups) Oh goodness, I think I have the hiccups. - Me too.
(both mimic hiccups) - All right, I'm gonna try
to keep my (mimics hiccup) serious face on.
- Okay. (pair mimics hiccups) - What kind of (mimics hiccup) food, (mimics hiccup) do
you like to make with your, (mimics hiccup) family? - I make it about, (mimics
hiccup) family about (mimics hiccup) things. (mimics hiccup) - Burp, oh, I just burped. (both mimic burps) (Bess mimics sneeze)
Oh! (Bess mimics sneeze) (Chris mimics fart) (gasps) (both gasp) (squeals) What kind of
food do you like to make? - Um, tamales. - Oh, that sounds delicious. - Or like spicy tamales or hot tamales. - Do you ever eat a spicy
food and then you turn red and you go (shrieks) and you
shoot up and hit the ceiling? - And I can be a panda. - You can be a panda? - Yeah, poof! - Oh look, you're a panda. You know what, I can be an eagle. Poof! I want people to understand that there are complications that
come with William's Syndrome. Can you talk about some
of the difficulties? - So the number one thing and why Bess and I like to reach out to so many of the newly
diagnosed families, is because with their heart complications, and they don't really know why, anesthesia is a really big concern. And so if a child goes undiagnosed, and then undergoes anesthesia, it can put them in a position
to go under cardiac arrest and they don't quite know what causes it so it's important to have a
whole cardiac team on standby. And so there's lots of families out there that we've reached out
to and talked to, said, "Hey, your child looks like
they have William's Syndrome, "go get diagnosed." The coolest thing about your videos is I've actually talked
to some parents who, they saw your videos and they went and got
their child diagnosed, and that helps save a life
because with the right care, they can go through anesthesia
in a much safer fashion, so. - [Chris] How does William's
Syndrome impact the heart? - Well, it makes the vessels super narrow and so when Bess was born, she was born with a lot of narrowing and they call it pressure
gradients, they were super high. - [Chris] How would you
describe William's Syndrome for somebody who's never heard of it? - I usually tell people that
they have some, you know, medical issues, primarily,
like with the heart. Some cognitive delays,
and numerous other things, just depends on the specific person. But they're always happy, they love music. They've never met a stranger. - [Chris] How much do you love Bess? - This much! - Whoa! Your dreams come true, Rogue. - [Chris] Do you like being
silly with your brother? - Yeah. (making silly sounds) Like silly stuff.
(Chris making silly sounds) (Bess laughs) That make me laugh. (Rogue laughs)
(Bess making silly sounds) (pair laughs) - [Chris] Does Bess
have any other diagnosis besides William Syndrome? - She does, she has, oh,
I don't wanna mess it up, it's P16 13 micro-duplication and it's very similar in a way. So there's just issues
with the heart, primarily. - What is your biggest goal for Bess? - Just to keep on goin'. I think she's a fighter, and just to do whatever
she has dreams to do. - [Chris] What do you wanna
be when you grow older? - Ah, hm, a ballerina or a
pop star or a hip hopper. - [Chris] Why do you wanna be a pop star? - Because I'm a movie star. - Is there anything else
you wanna talk about? - I talked about, like, dancing a lot. - You like to dance a lot.
- Uh huh. - Let's dance.
- Woo hoo! Oh yeah.
- Oh yeah. - Go baby. - Boogie boogie boogie boogie boogie. Do like this, this is my
favorite move. (humming) - Get funky!
- Get funky! - Get funky!
- Woo woo woo woo. - Woo woo.
- Dance party in the house. (Bess laughs) What is the best thing
about having a great mom? - 'Cause she really likes me. - I do like you a lot, I'm
your number one fan, huh? - Yeah.
- Yeah. (laughs) - Number two fan. - Oh number two fan, that's right, Daddy's your number one fan. (laughs) (pair laughing) - Boop. - We just and still do have a firm belief that she was put here for
a purpose and I think to, you know, make the world a
happier place, a better place. And so I always knew that no matter what, she'd come through, and she's
super strong and a fighter, and we're just super blessed. - You're a great person,
a lot of fun to be around. - Yeah, be around a lot. - Yeah, thank you for being my friend. - Thank you for being my friend. - Would you like to end the YouTube video? - Yeah.
- Okay, what would you like to say to everybody? - Thanks for watching, bye. - Bye!
- Bye! Like and subscribe and comment down below. If you like this video,
just comment down below and go on YouTube channel. If you like this video,
just go on my video. Like and comment. - You're a really good YouTuber. - Yeah.
- High five. - Hey oh.
- Hey oh!
