Race Against Time | Families with kids diagnosed with aging disease remain positive | Sunday Night


– Hi, I’m Adalia. – [Interviewer] And,
how old are you Adalia? – Twelve. – No. – (chuckles) I’m 12! – Eleven. – I’m twelve. – Not yet. – Well I am. – (laughing) All right, let’s do it again. And how old are you? – Twelve. (interviewer laughs) I am 12. – You have to say, I am 11 years old. – No, I’m twelve. – Okay, say, I am 12. – I’m 12.
– Everyone’s gonna know you’re not. (Adalia giggles) – So what do you like doing? What’s your favourite thing to do? – Eat, sleep, do musicallys
and watch YouTube. (slow music) – [Interviewer] And, on YouTube. – We like to pump it! We like to pump it! We like to dab!
– Adalia Pallante is a super star.
– We like to dab! – Hey guys! (laughing) – [Interviewer] Smart. – Get off of me woman. – [Interviewer] Single-minded. (laughing) Funny. – I need to twerk. – Stop, you’re not twerking! (upbeat music) – [Interviewer] She’s one of a kind. – [Adalia’s Mother] She’s tiny. – Make sure you like. – She’s probably one of the
smallest kids with progeria. – [Interviewer] Really? – Yeah! – [Interviewer] How much does she weigh? – [Adalia’s Mother] She
weighs like about 15 pounds. – And, how tall is she? – I think 32 inches. She’s 32 inches tall. ♪ My baby don’t mess around me ♪ ♪ ‘Cause she loves me so ♪ – [Interviewer] Small in size but a giant in so many other ways. – And, I try my best to make people smile. Because I know some of the
people feel really down. And, I know what you’re going through. – [Interviewer] She has an
extremely rare condition called progeria. It’s also known as a
premature-aging disease and the average life
span is just 14 years. Adalia will turn 12 in December. – Progeria is an ageing
condition and it makes you age like eight to ten times
faster than a normal person. It’s the protein progerin. Everybody has progerin in their body. Everybody ages but their
bodies make it a lot. (slow beat music) (whirring) – [Interviewer] As Adalia’s
body races against time she’s cramming in as much life as she can. (whirring) That’s her little brother, Niko, along for the ride in a
miniature Tesla motor car. (slow beat music) (tyres squealing) – [Interviewer] Look at you! One-handed, one-handed driving. – Yeah. Sometimes I use two hands. – [Interviewer] For Adalia
and her family, dad Ryan, mom Natalia, and three younger
brothers, time is precious. (sombre music) (pretend gun shooting) They’ve moved into a caravan
park close to a hospital because she’ll need more medical care as the disease progresses. – I love watching her help her brothers, teaching them lessons, and
it’s kind of like an aha thing for them ’cause when they get older they’re gonna remember her. – [Child In Background] Bubby! – [Natalia] Wearing a robe! That’s another reason
why I record everything! – Ahh! – [Natalia] I record, I take pictures, I, – There’s bats in there guys! – Literally capture everything. “Why is your mom always in your videos?” “She’s really annoying.” (drumrolling) – [Interviewer] Natalia and Adalia have an incredible
mother/daughter relationship. – Because we’re a team and if she wants to be in my videos she can. So back off! – My girl! My girl! – Their bond began
– Boom! – [Interviewer] before Adalia was born. (exploding) – I remember being pregnant
and always thinking something was going on. I don’t know why. And, I always told my mom, she’s gonna be my little Tinkerbell. Like, I know my baby’s gonna be tiny. I know my baby’s gonna be
like this delicate Tinkerbell. (soft music) There’s Ryan. – [Interviewer] Did the
doctors say anything? – No, they didn’t know
anything when she was born. They just were so focused on me to breastfeeding her and nursing her. She would never latch on. Her mouth was so small. – [Interviewer] It wasn’t
until she was three months old that doctors diagnosed
Adalia with progeria. – She was starting to have
like her hair fall out. My mom would tell me, “Oh,
it’s gonna grow back in.” “It happens to all the babies.” (deep breathing) But like her little
fingers and her stomach, and like she had some joint contractors, that’s what they’re
called joint contractors, and she started, her veins
started to be prominent, right here especially. – When you get news like
that, that changes your life. – It did but I didn’t look
at her any differently. I thought, I had a mission and
that was to take care of her. I didn’t think, oh my gosh, is a burden. This is overwhelming. No, I thought about it
as, this is my baby. Like, she needs me! You know, I use to ride this
train when I was your age. – [Interviewer] For the first
10 months of Adalia’s life, Natalia was a single mom. – [Ryan] Oh yeah, there’s
a lot of turns right here. – [Interviewer] Then
Ryan, an old boyfriend from high school, asked her on a date. – And, that’s when I met Adalia. She was about 10 months. Just starin’ at me in the
car seat and you know, it’s the cutest thing and, – La,la,la,la. – [Ryan] I was able to help her learn how to walk, talk, potty train,
go through all those things. – Lights! (clapping) – You know, I hadn’t had
any kids of my own. Hooo! (drum beating) I was, to be honest, really
scared to commit with Natalia because of Adalia. You know, just because I didn’t
wanna, that responsibility, I didn’t wanna screw it up. – She’s incredibly positive. – She’s very positive, yeah, yeah. (knocking) – Hello! – [Ryan] When I get
into those grumpy moods or I start feelin’ down
and lookin’ around at, you know, bad situations, she really just like
helps you lift yourself up and think about it like, you
have a lot to be grateful for. (upbeat trumpet music) – [Interviewer] Adalia’s
upbeat outlook is contagious! – Woo-hoo!
– Whoa! – [Interviewer] It’s one
of the reasons she has so many online fans. (cheering) – This is from Tina Latina, “Thank you Adalia for
always making me smile.” “You are beautiful inside and out.” – You’re welcome. That’s who I am in real life. I’m so fancy! – [Interviewer] Her
videos have been watched 170 million times. She records herself being made up. – Show off my cute outfit! – [Interviewer] And, dressing up. Glamming up, right down to her nails. – She’s funny and kinda
feisty at the same time. She can be crazy, like her mom! (upbeat music) (Adalia singing) – Hey, switch sides! Switch sides! – [Interviewer] But it’s dancing Adalia is really crazy about. ♪ Get that together ♪ ♪ So we can get together ♪ – And, when the music starts, she won’t let you stand
by the side and watch. – [Natalia] That was good! – [Interviewer] You have to join her. ♪ So we can get together ♪ Am I a good dancer? ♪ You need an angel ♪ ♪ Get that together ♪ – You be quiet! Yeah, you are. – [Interviewer] Am I, yeah? (Adalia giggling) – He was like this. (interviewer laughs) – [Interviewer] How would
you rate me as a dancer? – Uh. – [Natalia] One out a ten. – A hundred. ♪ I think I’m losin’ my mind ♪ – [Interviewer] What do you
feel when you’re dancing? – Like a star. – Like a star? – But like, a really famous, famous, super, super famous star. – [Interviewer] But you’re
pretty famous already, aren’t ya? You have lots of followers.
– Yeah, I know. (Interviewer chuckles) – So how many followers do you have? – I don’t know. All I know is that I
have a lot of followers. Like a bunch! – Do you remember I showed
you the video of her? – [Little Girl] You’re so cute! – It’s her birthday! – [Female In Background] Oh, right here! – Happy birthday! – [Adalia] Thank you. – [Interviewer] With all the
fame Adalia and her family have also attracted bullies and haters. – [Natalia] Okay, let’s go. – Like sometimes I just don’t wanna go out in case they stare at me. – Yeah. – Or sometimes I’ll come
home and start crying. So you’re staring at me and I’m like this. And, then I get my gum and I go like this. (chewing) (laughing) – [Interviewer] Sometimes mom
Natalia is attacked as well. – They’ll even say, “You’re
using her for money.” And, “You’re a money hungry whore.” “You’re using her as a cash cow.” “You’re a horrible mother.” I’m like, all right, whatever. A question, “Why is your mom so fat?” Hmm! – Do you see this chubby face? It’s gorgeous. It’s fully beautifulness. Look at us! – And, if you don’t like it, mind your own business!
– Get off it! And plus, get off the
channel if you don’t like it. Delete it! – You are the priority! You are the most important thing today! – [Interviewer] As brave
and spirited as she is, Adalia’s health is extremely fragile. – [Natalia] Let’s see how tall you are. – [Interviewer] There are
regular medical check ups to follow the progress of the progeria. – [Lady In Red Shirt] How are you doin’? Okay? You doin’ okay? (Adalia crying) – [Interviewer] She is
especially vulnerable to blood clots on her brain. – Well, her first stroke was
at like five or six years old. – [Interviewer] Her first stroke? – Yeah, she had a stroke.
– How many has she had? – Maybe like five. – [Interviewer] But still,
Natalia and Ryan are careful not to worry Adalia. They keep their fears to themselves. – It’s just really scary
because you just never know what the next day is gonna be like and we just try to cherish the good ones. – [Interviewer] What are you scared about? – I mean, her you know, passing away. You just never know, like,
what that could happen at any moment even while I’m here. – Everything’s been difficult,
I’m not even gonna lie. Her emotional side, that’s
by all, the most difficult. Think emotions are harder to deal with, to cope with, than physical. – [Interviewer] What do
you mean emotional side? – Her not being able to do anything. Finding things that she
can do with her siblings. – You try to stay positive
but that must be difficult. – Yeah, I never show her when I’m crying. (deep breathing) It’s always at night. I really stay up at night
and I worry about her. That she’s not gonna wake up. (sombre music) – Life expectancy, you know, on average is teenage years, 13/14. You know, she’s gonna be
12 in a couple months. Everyday we’re all getting closer, right? But everyday for her,
it’s like, multiplied. So her birthdays are a big
deal to us and everyday, you know, we try to make the best of it. – Hey! – [Interviewer] And, making
the best of a situation few of us could ever
imagine is what makes Adalia an inspiration to so many. – What are my dreams? – [Interviewer] Yeah, what do you want? In life? – Everything. – [Interviewer] Everything? My dreams are to be tall. Which means, I don’t think
that will happen, and… I don’t know, just everything. – My name is Meghan. I’m a senior in high school. I’m 17. I like purple, and
cats, and flower crowns, and I’m a runner! (upbeat music) – [Interviewer] While most
people with progeria die in their mid-teens, Meghan
Waldron is defying the odds. ♪ I was scared of pretty girls
and starting conversations ♪ ♪ Ahh ♪ – She’s fit, active and so far at least, appears to have slowed
down the relentless march of the premature-aging disease. ♪ Oh and they come unstuck ♪ – I actually run by myself everyday. – How fast are you? – Not as fast as everybody
on my team but like, I’m not the slowest, so! ♪ Lady, running down to the riptide ♪ ♪ Taken away to the dark side ♪ ♪ I wanna be your left-hand man ♪ – If you had the
opportunity to tell people things you’d like them to know, what would you tell people? – I’m 17, not four. Don’t talk to me like I’m four, even though it looks like I’m four. That’s a big one! – What else? – Like, I can do things
that everybody else can do. Like, I don’t have a problem
doing things by myself, and then people ask me if I need help and I’m like, no, I’m fine. But apparently I get it a lot. (ukulele music) ♪ I was scared of dentists and the dark ♪ ♪ I was scared of pretty girls
and starting conversations ♪ – [Interviewer] Because of her age, Meghan is much more
aware that she’s living on borrowed time with progeria. – Technically, it ages
the body internally, like age ya 10 times faster. – So what symptoms for example? – Lack of hair, mostly. – How do you feel about that? – Well, I like my hair. I’ve always had this one,
like, bit of hair in the front, for like as long as I’ve
known, so it’s kinda just me. But, you know, sometimes
I wish I had more hair. I do like my hair though. (chuckles) – [Interviewer] But overall Meghan is doing exceptionally well. In fact, she’s bringing hope
to many kids with progeria, thanks to an experimental drug trial, that’s had promising results. – I want you all to know that I believe I wouldn’t be able to
do all the things I love if it weren’t for the treatment. – This drug helps the
children have, in many ways, it improves in many ways
their bones, their hearing, but most importantly, their hearts. It makes their hearts stronger
and then just recently we learned that it actually is making them live longer as well. So it’s wonderful, modestly
extending their lives. – [Interviewer] Audrey
Gordon is co-founder of the Progeria Research Foundation. For more than a decade, the
foundation has been developing drug treatments with the help of Meghan and other volunteers. – So what’s your hope? – Our ultimate goal is to cure progeria. Our vision is a world where every child with progeria is cured. – You think that’s possible? – I think it’s absolutely possible. – [Interviewer] Already,
the new drugs have extended the life expectancy of progeria sufferers by as much as one and a half years. – The purpose of it is to block progerin. I believe in the cells,
so the overall goal is to make the child with
progeria more healthy. – [Interviewer] Has it worked? – I think so, well no, I know so. – Because you’re much older
now than the average life span, someone with progeria? – Yeah, so the average
life, the average life span, which I hate the word of, ’cause it’s really not accurate, but it’s technically
like 14 1/2, so, I’m 17. (chuckles) – [Interviewer] So it’s helped? – Yeah, definitely, oh yeah! (gentle music) – That’s a good picture. – Yeah, that’s cute. – Yeah, I like that. – [Interviewer] Meghan’s
dad, Bill, and mom, Tina, are not just relying on drugs to prolong their daughter’s life. – You like crowns I see! (chuckling) It started at an early age, aye? – [Interviewer] Diet is also crucial. – We’re vegetarians. We eat, you know, like whole grains and just organic food all the time. – We always eat organic, and vegetarian, and healthy, whole wheat
and all that stuff. So he does a lot of that. I don’t really.
– That’s a good thing though, right? – Well yeah, it’s a good
thing. It’s just exhausting. (chuckling) ‘Cause I can’t eat anything sweet. – [Interviewer] And, her
family also encourages lots of physical activity,
which as we know, is fine by Meghan
because she loves to run. – She’s gotta stay active to
keep those joints loosened, and moving, and not building
up an arthritic situation. She’s gotta stay active to
keep her heart beating fast. – Did you take your meds?
– No! – Wow! – [Interviewer] And, there
may be one more ingredient in Meghan’s surprising longevity. The support of her mates. She was three when she met
her best friend, Anais. – We both talk about, you
know, how progeria sucks, like, to be honest, it does suck. And also, like, sometimes I just feel like out of all the people in the world, like, my best friend, like the one person I’ve connected with, you
know, on this entire planet, the way that I have, and
probably the only person on this planet that I ever
will have a connection with like that, you know, has progeria. I just, it’s frustrating. – [Interviewer] Anais is taking
matters into her own hands. She’s studying molecular
biology at university, so she can find a cure to help Meghan. – Oh, that’s your toe!
– Ow! – [Meghan] Ah! (laughing) – She’s living a very long life
and it’s just really amazing and I think that, like,
if there was a cure that could be found, that
would be even more amazing. That would be really– – [Interviewer] You wanna find a cure? – Yeah! That would be nice. (chuckling) That’s like one of my life
goals, to help find a cure. – [Interviewer] Well, you could, I guess. – I believe I can, yeah! – For the next five
days Cassidy jumped off as many things as she could find, flapping her wings and running
her legs at the same time. – In the meantime,
– None of it worked. – [Interviewer] Meghan’s
busy with her own career – On the evening of the fifth day,
– as an author of children’s books.
– Cassidy stood on the bridge above the river and wondered if she’d ever
– Her first, a story – learn how to run on the wind.
– about a bird, who struggled to fly. – She’s a runner. She kicked and flapped
with all of her might and then soar high above
the river and the trees. Yes! She yelled, while she
flapped and ran in the wind. And, then she learns to
fly and it’s all happy. – What’s the message? – Basically, just to like
keep going and not give up, even when you think it’s hard. ♪ I gotta lump in my throat ’cause ♪ ♪ You’re gonna sing the words wrong ♪ Don’t clap! I’m done. That’s it.




Comments
  1. AWWW I FEEL BAD BUT SHE IS SOO CUTE I AM SO UGLY AND HER PERSONALITY IS SO AMAZING EVEN IF SHE SOMETIMES MAKEZ YER MOM MAD BUT MAN SHE IS AMAZING LOVE YA ADALIA 💕💕💕💖💖💖💖❤❤💓💓💓💓💗💗💗💚💚💚💙💙💙🧡🧡🧡💛💛💜💜💛💟❣💞💝💟❣💌🧡🧡💜💘💘💘💖

  2. I pray Adalia will live for a very long time, fully, happily and being loved because she just don’t deserve to live so shortly. :’(

  3. You are a brave and lovely young lady and your mother and family are very lucky you have graced there lifes.i would like to tell you i love you and your family .god bless you and yours

  4. She is Beautiful in her own way and I hop she knows that! And get it girl tell those people to back off! She is awesome and Unique and beautiful

  5. I was just watching this cause I was bored but I didn't expect to smoke and feel joy like I do at the very moment I'm watching this. God bless Adalia. Love ya gurl

  6. That girl is absolutely adorable. Why can't I have a little Adalia in my life?:( It horrifies and infuriates me that people would put a dislike on a video about a girl that is adorable, fantastic and inspiring also when she's going through a lot. Those people either did it on accident and didn't know, or they're just… mean 🙁

  7. I’m a amazed. Adalia is such a joy to watch. Smart. I’m laughing at her jokes and sassiness yet I get teary while I’m watching this. And Meghan is also amazing.. she’s so talented.. I wish the best for them and the family. God bless you all.

  8. 10:36 made me cry 😢😢 all the haters dont have a heart cuz for this girl as one a big loveing heart 😊😊

  9. I'm so glad she is living her life she is so pretty when she has progeria you parents take care of her and keep her in your hands

  10. She honestly seems like the sweetest, kindest little girl in the world. I wish her and her family nothing but the best! 💜

  11. I lOVE HER POSITIVITY !!!!!! YASS ADALIA
    MEHGAN and ADALIA and anyone else your true angels i love hoy guys so much

  12. Omg shes ELEVEN!!
    Shes so young!! 😭
    I am subbed to her YT and shes such a great singer!! Check it out
    Adalia Rose <——

  13. Megan is really good at (insert instrument name cuz I forgot) . These girls are so pretty too ^w^
    They're doing so well ♡♡♡♡♡♡

  14. After watching this video I feel so guilty for saying things like this is the worst day ever and today sucks and I think everyone else should be too.
    People should just be happy they can live the life they have. This video is truly inspiring.
    Keep it up!!! ❤️❤️❤️

  15. The ignorant comments of some people. I bet you anything that a lot of those people commenting don't even have kids,a family, husband etc. She is a hell of a mother & she deserves as much uplifting support that we other mother's can give her. These girl have a purpose

  16. I think that most people with progeria just wanted to be treat normally… like why can't we just treat her that way. Act normal. Treat her like everybody else. And one day when it's time we can cry and all but it will all end with a smile.

  17. What absolute angels … this should make it painfully obvious how insignificant all of our problems really are. These little girls are living the way we all should, like we're dying. The difference is … they have no choice. We do. Take care of yourselves, and smile. You have no excuse not to.

  18. They say the average life expectancy for people with a progeria is 14 years. A boy named Sam Berns, lived to be 17. The oldest living person with progeria was a boy that I don't quite remember the name of, but he lived to be 26. And I think Adalia will live even longer.

  19. I would give my life one of these two and I don't care I would die because these girls are amazing, they are the best. I would give my life for them.

  20. Ok since this came out a year ago, she is like 1 and a half years older than me, so she is pretty close to my age. And SHE LOOKS SO CUTE I WANNA BE HER FRIEND SO BAD. I WANNA DRIVE A TOY CAR WITH HER, AWWWWW I WANNA MEET HER! She honestly rocks her look, and EEP GOD BLESS HER! SHE IS SO POSITIVE AND ACK I LOVE HER ALREADY!

    Wait but I haven’t watched the whole vid yet, did they say her channel?

  21. I cant believe how cruel ppl can be aboyt the mom. I love the energy snd loving relationship they have. They are a cute mom and daughter team

  22. I’m crying so much for her I love her so much she is so positive and beautiful I love my parents also we should appreciate what we have. Cause one day we might not be able to wake up and have it all. Tissues used: 4

Leave a Reply

Your email address will not be published. Required fields are marked *