- Hey Maddie - You gonna sit with Chris? - [Chris] Can I sit with you? - Yeah. - Maddie, Maddie,
Maddie. my friend Maddie. Hello Maddie. Hi. - She's just the sweetest kid. Just always just wants to
love and and receive love. It's everybody that knows her knows that. - I'm so happy we get the meet today. - Hi. - Hi. Are you happy? - Yeah - I'm happy too. It's always so much fun
meeting a new friend. - Hello. - Did you just boop my nose? - Boop - Boop, boop, boop, boop, boop. - Is that silly? - [Chris] What is Maddie's diagnosis? - So she has lissencephaly. More. Microsephaly, autism, and epilepsy. - Lissencephaly means that her brain didn't form all the way when she was in mommy's belly. And as a result of that she, her brain is smooth. So unlike a normal developed brain, that has ridges on it, Hers is smooth and it causes her to have a hard time
with learning new things and with her balance and
it makes her have seizures. - I'm about to do the
silliest thing ever done? Boop, boop. Boop, boop.
Boop, boop. Boop, boop. Boopity, boopity,
boopity, boop, boop, boop. Boop. Boop. Boop, boop, boop boop, boopa boop boop. - Hi - Hi my bug. - [Chris] What's it like
to be Maddie's grandpa? - It's the Best. It's the best. - Hi. Hi. Maddie Loves her papa And Papa love his Maddie. - Maddie, right Now you
gotta say you're hungry? - [Chris] Did she just say she's hungry? Yeah. - [Chris] Does she communicate with words or does she say it In a different way? - She says CLICK CLICK for hungry and SLURP for thirsty. - CLICK - CLICK - Are you hungry? - Whenever she goes GASP that's her yes. - [Chris] Do you like cookies? - GASP. - Yeah, You like cookies? - [Chris] Do you like donuts? - GASP. - That means yes. - She's in one of her good spouts of time where she's been so happy and playful the past couple
days up moving around. - What - Hungry? do you want a little snack? Okay, I'll get you a
little snack real quick. - Okay, We gotta wait a little bit. - [Chris] Does she
always ask you for food? - Yeah Like constantly. Come here. - Look what I got you. - Ready? - [Chris] How did you come to understand that her making that clucking
sound was her hungry? - You know, she just
started putting it together. We used to try to do go like this to eat and she started making
the clucking sound with it and she just, we kind of
gave up on doing this sign because she really
liked doing the clucking and it works for us and it's it is so cute and she's taught her
little brother to do it. So he clucks when he's hungry too now. - Hello. - Hi. - Are we friends? - Yeah. - Boop. Boop, boop. Boop, boop.
Boop, boop. Boop, boop. I'm being goofy. Do you like when people are goofy? - Yeah. - [Chris] Look you, you
communicated with us So your dad made you a little bit of food. Maddie, waffle. - [Chris] Great job communicating Maddie. - There you go. - What is that? - A waffle, eat it. What is that? - That's the fan. - [Chris] Does she ask
you about what thing? This is a tripod. Does she ask you about
what things are a lot? - Yeah. Yeah. - [Chris] Is that her way of bonding? - Yeah, bonding and I think just genuine curiosity. where she's like, "Really What is that?" You know? Like I want to, Even
though you could tell her a hundred times that's the fan, but - What's it? - That's a pillow. Do you have any other questions? - Yeah. - What's your next question? - What's that? - What's that? That looks like it's a wall. - What's that - Your waffle. - Yummy. - [Chris] Do you like explaining
things to your sister? - Yeah. - [Chris] Why? - Because when she
starts to understand it, she gets excited and it's
funny to see her get excited. - Hi. - Hi. How are you? - Mmm yummy. - Well we were told when she was diagnosed that we would be lucky if
she was alive for two years and that was like just
obviously devastating and you don't even
process it in the moment, you just kind of go numb. And then it all hit me. You know, just sitting
there one day looking at her I was like, oh my gosh. Like I only have, from what they're telling
me, just a few years. Like, I don't know if you have kids but it goes by like that and to, Sorry. It's really hard. It's really, really hard. - [Chris] How old is Maddie? - Maddie is six years old. - [Chris] What's it been
like as she's turned into a six year old? - Oh, it is definitely
has its challenges now that she is so much bigger. Especially with like lifting
her into the high chair coming up the steps to the apartment. I feel like I need to go start
lifting weights to get used to her being so poor. - [Chris] Have they been able to give you any more
information now that she's six? - No. - Nope. - our kind of motto is we
treat whatever she shows us. We take it day by day. - Yeah. Day by day just - Whatever she gives us, we roll with it. - The kitchen? Do you want more food? Yes? Yeah. Yeah. What do you want? Do you want a waffle or
do you want some yogurt? - Mm - Something else? Do you want a baby food? You want your puree food? - Yeah. - Okay. - [Chris] How do you
know Maddie loves you? - She goes like this, PWAH
and gives you lots of hugs. - [Chris] Do you love your dad? - PWAH - Yeah. - PWAH - Thank you. When she gives you kiss
she always goes PWAH. And like when she's in
the car on the phone and I'll hear from the backseat. She's giving me kisses over the phone. - [Chris] Tell me about your
relationship with Maddie. - Maddie's my granddaughter. She's my precious little angel. She has a personality that's unbelievable. Even with everything
that's going on with her. You gamma's big girl? - Yeah. - Yes you are. Thank you. - PWAH - [Chris] Do you teach
your friends about Maddie? - Sometimes. - [Chris] What do you tell them? - If they ask like what
makes her how she is, I told them what it is. - What is it? - She has autism and lissencephaly - [Chris] What is Lissencephaly? - It makes her have
like seizures and stuff. - [Chris] What is it like when you see your sister have a seizure? - It can be scary. - [Chris] Did you ever help her? - Yeah. - [Chris] How? - She has a magnet that
you can swipe right here that tries to stop it. What's wrong? Okay. You gotta wait Okay. - [Chris] Maddie, I
have a question for you. A really important question. Do you love Annabelle? - Yeah. - She has these periods
where for three weeks, she'll be happy like this playing, walking around, talking and then it's like a light
switch one day where it she just is like totally out of it. Can't even sit up on her own. Can't I mean she just doesn't
really do anything. And those, that's, that's really hard. - When she's having like her good times, she is loves to be social,
loves to laugh, smile, go up to people and talk when she gets in her spouts where she's
having a lot of seizures though she is more reserved, quiet, just a lot of whining, a lot of crying to get
what she wants instead of using her words like
how she asks for more. - [Chris] It must be difficult to see that when you know how playful and joyful she is when she's
not having a lot of seizures. - Yeah, but it it does make us really cherish
when she has her good days. Especially like today
I'm so glad she's having a good day today, but it
makes us really cherish them. They're special. - [Chris] What would be your estimate of ratio percentage wise,
Good days to bad days. - Lately It's Kind of 50 50 I'd say lately - [Chris] When Maddie was first diagnosed with Lissencephaly, what did you think? - No thoughts. We both just needed like our separate like space to just kind
of try to process it and it took months of like, like we'd be like, okay maybe
we're okay and then like one of us would have a bad night and just be bawling about it
until we kind of just built up and we still have bad days about it. Like cause it sucks. - It's a battle. We've been on all sorts of medications just trying to figure something out. - [Chris] On an average day, how many seizures will she have? - It varies, on a great day,
one or two, on a bad day, 150-200 - [Chris] Does that
just deplete her energy? - Oh yeah. Yeah. She's on, on a day where she has more than a couple, She's pretty much out the rest of the day. She's on the couch watching TV in bed. - I remember when shortly
after her diagnosis they had an appointment, Alex and Miranda, at the children's hospital. So I went with them for support.
Right. So they got done - Phew, stinky feet. - So that's when he said, look, you know, I can't tell you the prognosis because you don't know anymore because the brain is
not like it should be. So it's try to rework itself. and I'll never forget on my way home I said "Alex and Miranda," I
says, What do you guys think? What do you think? And they said, You know what pop, it doesn't matter because Whatever it is, we'll deal with it. I've never forgot that. - [Chris] What's the most important thing for others to understand about Maddie? - I think the most important thing is that she understands so
much more than people think. I mean, you can ask her so much and she might not be able
to answer you correctly, but she knows what you're talking about. She understands everything going on. When we're joking around in
stuff, she laughs appropriately. she really is, Her
understanding level is amazing. - What's that? - A waffle. - [Chris] If Maddie had one wish, what do you think she would wish for? - A million baby dolls. - [Chris] She loves baby dolls? - That's her favorite thing in the world. - [Chris] Do you like baby dolls, Maddie? - Yeah. - [Chris] Are they cute? - Yeah. - What's that? - What's that? That looks like a baby stroller. That's right. I said "baby". - Baby. - Baby. - You love baby dolls? - Oh, Maddie loves babies. She's loved babies since she was one years old
is when she first played with the first baby and she has gotten them
for gifts ever since. - Whoa. This is such a cool baby. Is the baby going to sleep? (Chris snores) Good night little baby. - Yeah - You want the clothes off? - Yeah. - Yeah. And dressing and undressing babies is her favorite thing to do with them. - [Chris] When we were playing she would make snoring sounds. - Oh Yeah. She likes to make them sleep. (Maddie snores) - You make her go sleep. - Do you see another baby you want? Look at that baby. (Maddie snores) Is she sleeping? (Chris snores) - And she loves talking to people, Loves when people talk to her, don't you? - Yeah. - Yeah. - What's that? - M and ms - Wow Another baby. (Chris snores) All the babies are sleeping. Whoa, thank you for
showing me another baby. (Chris and Maddie snores) Oh wait, I have an idea, Should we boop the baby? Boop. Boop. Boop Yeah, that is silly. - It's the best feeling in the world to like to
see her being herself because she she didn't
always have the bad days like she does now. As she's gotten bigger, I
think it's become harder for her when she is
having those bad days to to just support herself and then she's getting frustrated, smacking her head on stuff. When she has the bad days She has her soft helmet that she wears. Yeah, it's awesome When
we have days like this, it just makes you wanna like do everything you can in one day. Just like we're gonna go to
the pool, we're, you know we're gonna, we're gonna go
outside, we're gonna run around we're gonna do all the stuff we can do because we don't know how long, You know it could be a couple hours or
it could be a couple weeks. - [Chris] What's it like for you to see Maddie so engaged
in such a playful activity? - Oh, I love it. Maddie's in her playful moods. She is so precious. It's the best. Oh, what - [Chris] Maddie do we have
to be quiet for the baby? - Yeah. - Oh, should we whisper? - [Chris] How often is
she in a playful mood? - It really seems to come in bursts. She'll have like a couple good weeks and then it'll go downhill. She'll start having more seizures and then we'll have like a week or so where she just
wants to sit and not play. - [Chris] What's your
biggest hope for Maddie? - Just that she's happy. Nothing else matters to me
other than that she's happy and is able to communicate what she wants. Because I couldn't imagine having to, not being able to communicate what I want. Even if it, you know, if
it's not words, I don't care. It's just be able to tell me what you mean - [Chris] What would you say to a family whose child was just diagnosed with Lissencephaly? - I'd say to take it day by day and don't try to think of the future. Live in the moment as much as you can. And when they have those
special moments where they smile for the first time or they, you know any little milestone to
really just cherish that. Cause we cherish all of
her little milestones, little funny moments, just everything. I think it's really made us appreciate all the little things that she did. - I do believe in miracles and today has definitely been
one, I can tell you that. - [Chris] What do you mean? - By her actually being able
to get up and move around and not sit on the floor
where she can't lift herself. - I Learn from her. - [Chris] What do you learn? - Hi - That nobody's ever
gonna be the same day in and day out and it's okay. And one day it might be heartbreaking but Then this is the next day.
