THIS group of amazing individuals all have one thing in common - they have all defied medical odds. At one point in their lives doctors thought they wouldn’t survive… But they did! These eight people have some of the most shocking and inspiring medical journeys out there, from Jonny whose body was 95% burned to Christopher who is currently the oldest person in the world living with his medical condition. However defying all these odds isn’t the end of their stories, as many have had a tough road to face surviving challenging medical conditions and emergencies, but that doesn’t mean they give up!
Producers: Ruby Coote
Editor: James Thorne
Producers: Ruby Coote
Editor: James Thorne
Category
😹
FunTranscript
00:00This group of 10 incredible humans all have one thing in common
00:05They all have defied medical odds
00:07I had a third arm when I was born. At one point in their lives doctors thought they would not survive
00:14We were constantly being told that they're doing everything they can but chances are not good prepare yourself for the worst
00:22But they did
00:24Today Grace has had 33 surgeries. The doctor was like, oh my god. I've never seen this before
00:30However, defying all the odds isn't the end of their story. You go from having what you think is a normal child
00:37Someone who actually gets rarer by the day because he's surviving so long as he is
00:43It's just really annoying and creepy for people to stare at you
00:49Like that. And for those living past what doctors thought possible, it's not always an easy road
00:57But that doesn't mean they give up
01:01Starting with Kelly, she was born in incredibly unusual circumstances
01:06They have caused her to live with a multitude of difficult physical conditions
01:11The noise that you're hearing right now is my oxygen machine
01:15Basically, it plugs into the wall and I have this very long
01:20Cord that allows me to have free range of the house.
01:24I have two spines. It's a condition called kyphoscoliosis
01:28Which is the curvature of the spine and I also now have pulmonary hypertension
01:33When I was born, I was supposed to have a conjoined twin, but she didn't develop so I ended up with the extra spine
01:40Among other body parts. I have
01:43Only one eye that's real. This is an artificial eye. I had a third arm when I was born and back
01:51Here, it was not functional. So they removed it. Essentially the spines are
01:56Curved together. So it created me like a sort of hump and that actually over time
02:03has restricted my lung space and
02:06Caused me the pulmonary hypertension
02:08Which means that I have trouble breathing
02:12Because of the arteries between my lungs and my heart don't work properly anymore
02:16On top of the difficulties Kelly already faced, the diagnosis of pulmonary hypertension
02:23Came as a shock to her family due to its life-limiting symptoms. That was hard. That was really hard at first
02:30I don't think my parents quite knew how to handle that
02:35because that
02:36For some people is a life-shortening
02:39Illness. I need to have support through oxygen for breathing. I
02:44wear mine 24-7
02:46because it's it's important to
02:49To make sure that those arteries stay open
02:51But everybody is different. Everyone is different with it. I'm still sassy and funny and I feel
02:59beautiful
03:01Disability awareness is super important. I feel like it helps me live a better life. I started my tik-tok account about a year ago
03:08I have 35,000 followers now. I like to make videos regarding
03:13Disability awareness. Hi everyone. I just wanted to say thank you so much for all the love and support and
03:20Kindness that you've shown me so far
03:21I try to create funny content as well as educational content about people with disabilities and about my own
03:28Disabilities. Do you ever just wake up in the middle of the day and say I'm bored
03:33I think I want to make myself look like an egg
03:36Because I did. I receive a lot of questions about like what kind of
03:40Apparatuses do I use like my oxygen machine or my blood pressure cuff or things like that?
03:46Happy disability pride and these are not tears of sadness. They are tears of joy
03:53Okay, we are going to meet my best friend Shawn
03:56She's here to pick me up and we are gonna go to do a little antique shopping. My family are antique dealers
04:02They have been my whole life. So it's in me and I thought it would just be a fun outing
04:08The oxygen machine I use the big one for at home and this little one for going out the little one
04:12I call Roxygen or Roxy
04:16Hi Shawn, are you here?
04:20Awesome we'll be out in a few
04:25Without the pulmonary hypertension I was actually very socially active going out
04:31I could walk a lot more now. I just find it a struggle. I still do it because it's fun
04:38How are you good hi, how are you good good
04:47I
04:49Was mostly looking for a piece of art for my wall. I really value art. I think it's our
04:56Escape
04:57From the daily norm and I just like to look at it makes me happy
05:01initially, the doctors told me that I wouldn't live past a year and
05:06I really showed them
05:08I'm 37 now. It's not fair to put a timeline on somebody's
05:13Health because you're not in their body. You're not in their spirits and you don't know
05:19When I was a kid, my dad gave me the most important piece of advice
05:23He said everybody has a disability whether it's a trauma a physical disability an invisible disability
05:31alcoholism anything as
05:33I got older until I realized the depth of those words
05:37He meant no one was any better than me or any less than me
05:40I'm just a human and everyone's just a human and they can do whatever they put their mind to I don't let my disability
05:46Limit what I love to do
05:49Like Kelly
05:51Marty has also proved the doctor's wrong
05:55Living past his original prognosis
05:57Hello. Hello
06:01All right, you're ready I'm ready
06:04My name is Marty City. I am 33 years old
06:07I was born with a rare condition that makes my legs look like a parent's to this
06:13I
06:17Was born with two really rare medical conditions called
06:22arthrogryposis and
06:25Poon belly syndrome. I had club feet
06:28Swelly out sits this located hips and club hands when I was born
06:35People call me to delays
06:37my hips the dips located out of socket and
06:42That's what allows my legs to look like a parent's business
06:49We never set at the table
06:51This is false
07:06One time we was in Chicago and Marty was walking cross-legged and the doctor looked at him and said, oh my god
07:12What's he doing? How's he walking like that?
07:15We said, I don't know. He just started doing it
07:18He just crossed his legs and he started walking around and he was mobile. So the doctor was like, oh my god
07:24I've never seen this before
07:26So he called all the head doctors out and they peaked all peaked out the door and they were looking
07:30You got to see this kid. You got to see this kid. Look at how he's moving
07:35If I tried to walk sweetly then I
07:39Walk really slow. I had no balance and I walked like a penguin
07:44But
07:46Then when I talk to my legs, I
07:50Can walk and I have my awesome mobility. I learned how to do that on my own
07:58To benefit my mobility if I talk my legs
08:02I have this amazing balance and the doctors just said keep doing it because if we tried to correct your legs
08:10And fits on the right way you won't have the mobility that you have now I
08:19Have laid braces to help me walk more stable
08:25I've ate 60 pounds and I'm 4 foot 10
08:29So being little and the weight does affect me lifting some things
08:35I don't see my life hard
08:37I see challenges and I need help with things
08:41But I feel that we all need help with things sometimes so I don't see that as a blockage or limitation
08:53The doctors told my mom and dad they wouldn't live past the age of two we took them everywhere we did everything
09:00There wasn't any a weekend that didn't go by when we had the opportunity to go somewhere to do it we did it
09:08My parents are the whole reason I'm able to fully succeed
09:22Go to the hockey games take them up all the stairs all the way down people are looking like what the hell is that guy
09:28We experienced a lot of looks you know at Marty
09:33But we always let Marty go out and do this thing. You know we didn't hold him back
09:38Because of Marty's unusual appearance people haven't always been kind to him, but rather than let that get to him
09:44He's made it his mission to raise awareness about his condition. I try to tell almost everybody
09:51At least a little bit about why I have what I have I?
09:55Want a non-profit organization called the projects as it is coming soon by traveling around
10:01Meeting other families. I'm trying to raise awareness for people like me as much as possible
10:08He's got so many friends now, and they all love him, and I call him my walking saint
10:14Can you help me put this in the back seat?
10:19Well on our way to
10:21Another person that also they put this his name is Brian. Well on our way to his house in Newport and
10:30I'm extremely excited about meeting Brian. I can't wait. It's gonna be
10:36flipping wonderful
10:44Hey, what's up, dude? How are you?
10:51Everyone was arthrogryposis is affected differently
10:55My hands are affected the most my hips are affected and my feet
11:01My fiance had told me about Marty me and Marty started talking and then he finally came over and we met and we just
11:06Hit it off
11:10To be able to
11:13Be selfless
11:15And just want to help others. You know it takes a special person
11:19And then we'll go fast down the road though. He puts people ahead of him, and I think that he's doing what he was meant to do
11:32Hey
11:39It is
11:43Me
11:56Thank you for the wheelchair wide
12:04We just feel blessed yeah, it's just a blessing I can't even put I make you cry I
12:11Can't proud is like for a parent
12:17With it's
12:19Overwhelming and fulfilled into my heart. I mean he makes my heart happy
12:27Any disability I feel and I'm seeing that people with disabilities if you join the community
12:34It empowers you more
12:36Then you're able to touch someone's life
12:40It does something that money or any material thing cannot buy it
12:48my purpose and
12:50I'm just taking every action and every step to follow it
13:00Not all life-threatening conditions are things we're born with some people's life-limiting prognosis comes as a result of other factors
13:08Like Johnny whose life changed forever after a single accident
13:15Why did I even survive?
13:18Why didn't I just die in the fire I?
13:22questioned that all the time I
13:25Was four years old when I was burned, and I was burned 95% of my body
13:33My arms
13:35My torso my legs
13:39And I obviously my face
13:43You couldn't tell
13:4618 year old Johnny was playing with his sister in the garden shed when a fire started
13:51After a candle was knocked over by the family's dog
13:55This is where the fire happened
13:57But it's a completely different shed now. It was rebuilt I
14:02I
14:03Had heard screaming and so I ran outside
14:07After several attempts to find Johnny his sister was finally able to pull him out of the burning shed
14:13That day brings back a lot of different memories
14:18feelings that are
14:20difficult to deal with
14:24Stressful panic terrified
14:32I
14:34Didn't understand until I was older when all of my troubles started when I was 10 and 11
14:40Boy, you was a tender little boy
14:46Be careful touching you for a long time
14:51So we're cousin that other picture
14:53I'm climbing a tree and I remember what it was like to have fingers and hold on stuff
15:01I was becoming a teenager and a parent started to matter to me and I started to realize that I really don't look normal
15:11I just started to really hate what I looked like
15:18I felt like I was
15:20Genuinely a monster and I shouldn't had friends because everyone was scared of me and I didn't deserve them. I
15:28I kept all of this turmoil inside of me for so long, but it turned into
15:33Anorexia where I just didn't even want to take care of my body anymore where I just stopped eating
15:39But I never realized how selfish I was acting
15:43Obviously, I had a family that cared about me, but I never realized it
15:48I
15:53Realized that confidence is a habit. It's not a personality trait. It's something you have to work at
16:02Instead of looking in the mirror every day and seeing something that I hated
16:06I started to see what I could enhance and see what I could accept
16:10What helps me have more habits of being confident is adopting fashion and trying to look
16:17Presentable because if I can feel good about myself, then I don't really care what else someone else has to say about me
16:26This one was really awesome a lot of people replied about it
16:32So many of the comments don't make me smile a lot they really make my day awesome
16:38With Johnny's newfound confidence
16:40He was spotted by the charity Courageous Faces Foundation and today he's doing a photo shoot for them
16:46I'm so excited. I could not wait. This is unreal. Looking good, Johnny. Looking good, buddy
16:52Thanks, I cannot wait to get this started. It's gonna be a good time. It's gonna be a lot of fun
16:56I've always wanted ears because I wanted to enhance myself
17:00People that have rare and severe medical conditions, they don't really get the help that they need
17:06And do you button those as well? Yeah
17:09Because it's like a turtleneck
17:14Courageous Faces Foundation
17:17Makes my dreams and passions seem like they are reality things that I have always wanted they make obtainable
17:24Johnny is doing great today. He's having so much fun. He wants to show people who he is and that he's just like everybody else
17:31And hopefully this photo shoot is doing that for him today
17:34I absolutely love it. It feels so natural honestly
17:38When I realized how confident I could be then I was able to make friends
17:44I would describe John as someone who is very entertaining, very entertaining and very energetic
17:49He's got a great energy and I love him
17:52He was very outgoing. He liked to talk to people all the time
17:59Hello. Okay. Work it, John. Work it
18:04Work it, John. Work it
18:07Work it, John. Work it
18:10Work it, John. Work it
18:16He's definitely made me more confident in myself
18:19Because I see him over here doing things that I've dreamed of doing and he's over here being confident
18:25A lot of people just call them a darn victim and I was totally a darn victim too
18:31Somebody who just lets their situation take control over their life
18:35When you're a darn survivor, you're just surviving
18:39I like to call myself a darn thriver now
18:43Because I'm actually thriving in my darn
18:47There are still parts that I feel insecure about
18:51But I know that everyone has scars and mine's not more or meaningful than anyone else's type of scar
18:58Mine is just visible and I'm not ashamed about it
19:01I want to be the person who changes other people's minds
19:05That they can be comfortable in their own skin if I can be
19:14Caitlin wasn't born with her condition either
19:17She lost all her limbs at just 18 years old
19:21Ready. My name is Caitlin D'Opero and I'm 25 years old
19:24My name is Caitlin D'Opero and I'm 25 years old
19:27I contracted bacterial meningitis when I was 18
19:32And I ended up getting all of my limbs amputated
19:40So pretty much every morning I put my legs on
19:44My brother has to put on lotion first
19:47After I do a couple of steps or walk around a little bit
19:52That makes the suction start to work I guess
19:59Yeah and it farts
20:01Glasses off?
20:03Or...
20:05Yeah
20:11What was Caitlin like as a young child?
20:16This is June 16th, 1994
20:21And this is Caitlin Rebecca Marie
20:27Caitlin was adorable
20:31She was just a lot of fun
20:34She'd get the whole family laughing at her funny giggle
20:42When I first started to feel sick I didn't really pay attention to it
20:46I wanted to go out and have fun
20:50What was Caitlin like as a teenager before her illness?
20:56Caitlin was a handful
21:00She was very outgoing
21:03She was involved in things like dance and kickboxing
21:08She was a typical teenager
21:11She was a challenge
21:14She liked to go out and have a good time with her friends a little bit too much I think
21:22When I first noticed my symptoms I was super exhausted
21:27I didn't want to go out and party and that was really weird
21:31Within those first 12 hours literally my whole body started to turn purple
21:36Like right before my family's eyes
21:40It progressed very fast
21:43We were constantly being told that they're doing everything they can but chances are not good
21:49Prepare yourself for the worst
21:51It was probably the peak of trauma that I've ever experienced in my life
21:58The meningitis got into my bloodstream and pretty much cut off all circulation to my skin and limbs
22:05And so a lot of those surgeries, I think I had like 22 in total
22:09Was taking skin from areas of my body that weren't affected by the illness
22:16And putting it on the affected areas to help grow the skin back
22:21It was terrifying
22:23My memory of Caitlin's illness actually gives me PTSD if you have to think about it
22:31And then the disease kept just eating away up my arm and they kept having to cut it shorter and shorter and shorter
22:37And shorter and shorter
22:43I ended up getting all of my limbs amputated
22:48In total Caitlin spent six months in hospital due to the severe life-threatening effects of the meningitis she contracted
22:55Before returning home to adjust to life without her arms and legs
22:59Over the years it's become more real that my life has changed a lot
23:06My hair's ridiculous
23:08There's so many ways that I changed how I do things
23:13I ended up just shoving my face into food
23:16Don't forget the dipping ranch
23:19Acting like a lizard and just kind of picking up popcorn with my tongue
23:22I ended up pulling my pillow down with my teeth
23:28It's taken a long time just accepting my life as it is
23:38I think makeup changes the way that I feel about myself
23:43In the way of like when I look at myself in the mirror
23:47If you want to see me go from this to this then keep on watching
23:52I wanted to start my YouTube channel because I used to watch a lot of makeup tutorials
23:57That's when I became obsessed with makeup
24:00Today I'm going to be doing my first ever Halloween makeup tutorial
24:04I was like that looks really fun and something that I could do
24:09I'm going to be doing my first ever Halloween makeup tutorial
24:12I was like that looks really fun and something that I could do
24:22To go through an experience like this and come out healthy, happy, strong, wonderful, beautiful individual
24:31And I totally admire her
24:34I forget that she has no arms and legs because she doesn't complain and she gets things done
24:41My favorite thing about my sister is just her inability to give up
24:46It's not that she refuses, it's she can't give up
24:51And she just will push through anything and everything she has to to get where she needs to be
24:57And I feel like she's where she needs to be now
25:11I'm just going to give you a yogurt
25:14When Christopher was born, the doctors said there was no chance of him living past the age of two
25:19But he's now the oldest person in the world with his condition
25:23Proving the doctors ever so wrong
25:26Nothing, I need assistance with everything
25:29Whether it's eating, taking a shower, brushing my teeth, going to the bathroom
25:34I have to pretend
25:37His condition is worse and worse every day
25:41He was driving and he fell down and we had to go to the doctor
25:46I think that he was, yes
25:49That happened nine months ago
26:06Here is when he was four years old
26:10The doctors say he's going to die
26:13That was very hard and we say we have to do a big, big party because he's going to die
26:18Every single year after that, we go to the same doctor
26:22And we rub it in his face that I'm still alive
26:26I am 24 years old
26:29His chest is very tiny for his organs inside
26:33One lung totally doesn't work
26:36When the machine beep, I know that he needs oxygen fast
26:41But when the machine don't beep, he told me, Mommy, I need oxygen
26:46It's because he feels that the mucus coming
26:48The doctor showed me how I had to do it
26:51The first time, that was very, very scary
26:54I just can't disconnect here
26:57When I do this, oh my God
26:59But with the time you use it
27:01I learned how to suction him at a really young age
27:05Since like seven years old
27:07The first time I suctioned him, I was definitely scared
27:10Because we were in a moving vehicle
27:12My mom was driving and he needed suction right away
27:15And there was nowhere to stop
27:17Definitely has prepared me for everything that's happened since
27:19And I made it a better applicant for medical school
27:24Christopher's condition has definitely molded my path
27:27Because of him, I am going into the medical field
27:31Journalism has been a very important part of his life
27:35I know that he always wanted to be a journalist
27:37Christopher has also developed a skill for finding and getting photos
27:41With A-list celebrities
27:43The first time I became famous
27:46Is because my Instagram numbers started to go up
27:49This is the day, four months after the World Cup of 2014 happened
27:57That day, Christopher took a picture with James Rodriguez
28:01The number one player in the Colombia team
28:04The star player posted me on his social media
28:08My phone just starts blowing up
28:11Out of nowhere
28:13When I track celebrities, that takes a lot of dedication
28:16I need to know everything, every single step they take
28:21Billie Eilish was a hard one
28:23We just got back and we followed a car
28:26To a taxi place
28:28And there was literally half the city waiting outside the place
28:34She came out, she was a fan
28:37I got off the chair and we sat
28:39It was a cool moment
28:41Bill Nye's ex, he had just won a VMA award
28:45So he was in a good mood
28:47I got to the location
28:50Security was nice enough to let me in
28:53And wait for him to come out
28:56We were able to chat
28:58We were able to sing a little bit
29:00He was really, really nice
29:02My celebrity stalking skills
29:04Helped me with my journalism
29:07I only applied to three schools
29:09I wanted to show my family that I could do it
29:12But to doubt, I had my doubts
29:15And I got an email
29:17I opened it and it's Columbia
29:20It's Columbia
29:22This is the defining moment
29:24I got my Bachelor's Degree in Journalism
29:27From South Carolina University
29:29And my Bachelor of Science
29:32From Columbia University Graduate School
29:35South Carolina
29:37It was odd but I was able to
29:39Graduate with honors
29:41My mom, her face
29:44Watching her face
29:46I am very, very
29:49Proud of my son Christopher
29:51When he was like 10, 11 years
29:53I never think that
29:55He go to the college
29:57But after that he do the maestria
29:59And I am very, very proud of him
30:03When I go outside
30:05A lot of people want to know
30:07How we train him
30:09He used to be up every day, day
30:12He come to the park
30:14Every day we had to do this
30:16To see him smiling
30:18Laughing
30:20That's everything
30:22I don't need more
30:24I'm outgoing
30:26I like training people
30:28My dream is to be a sports analyst
30:31A journalist
30:33Writing
30:35And other journalism
30:37Is just to be able to tell
30:40Stories of immigrants
30:43That make our New York City
30:44What diversity that it is
30:47Being a disabled member
30:49Of the community
30:51It's not easy
30:53To change the narrative
30:55But obviously
30:57There's always got to be
30:59A first time
31:01There's always a first time for everything
31:07Less than 300 people worldwide
31:10Have what Grace was born with
31:12My name is Grace
31:14And I'm 13 years old
31:16So my medical condition
31:19Is called Escobar Syndrome
31:21It is where my joints
31:24And my muscles are a lot tighter
31:26Than most people's
31:28And as well as Escobar's
31:30I have scoliosis
31:34Grace's childhood has been
31:36It's a series of ups and downs
31:41Escobar Syndrome is very rare
31:42To date, Grace has had 33 surgeries
31:45She gets these joint contractures
31:47Everything from her jaw, her neck
31:49Her hands, legs, arms
31:51Everything just doesn't move as well
31:55I have had fixators
31:57On both my legs twice
31:59Those are where they take screws
32:02And they put them in your leg
32:04You twist them
32:06And it makes your leg straighten
32:08The journey has been very intense
32:10Every time that we do something
32:12With an OR
32:14Her genetics want to reverse it
32:16Her ankle, at one point
32:18When she came out of the operating room
32:20It was a 90 degree
32:22And over time, it's reversed some
32:24And so now she has pointy feet
32:26And so that's part of the reason
32:28That she wears these braces
32:30To help give her a little bit of stability
32:32I've had a spinal fusion
32:34I've had a cleft palate fixing
32:36I've had jaw stretches
32:38I've had two coronary dectomies
32:41And I've had a hand surgery
32:43And I think I've had some more jaw surgeries
32:48Even little things like
32:50Getting dressed every morning
32:52So she needs help getting her braces on
32:54She can't really bend down to touch the ground
32:56She can bend over
32:58But she can't pick things up off the ground
33:00I think the medical world
33:02Doesn't want to set limitations
33:04And quite frankly, I didn't want to hear them
33:07Now we set our own limits
33:08Now we set our own limits
33:11So I have a YouTube channel
33:13And it's called Grace Nova
33:16Hey everybody, it's Grace
33:18We want to teach people about Escobars
33:20And teach people about
33:22Like how to be friends with someone
33:24Who is a little bit different
33:31Grace decided she wanted to share her story
33:34So she started a YouTube channel
33:36So just be really gentle please, okay?
33:39Okay, so I'll start
33:41This is what like almost all YouTubers say
33:43It's a little bit cliche
33:45But just to make people happy and smile
33:48Grace started a YouTube channel
33:50This is an opportunity for her
33:52To set her own narrative
33:54Your hair looks great
33:56So today I'm actually going to film a video
33:59It's called Things to Do When You're Bored
34:02One thing that I think is funny
34:03Well actually, it's not fun
34:05But it needs to get done
34:07It's a practice piano
34:10And then we can cut to me
34:23Grace has really embraced music
34:25Sports were often times important in the family
34:29And she felt a little bit left out on that
34:31Music is hers
34:35There are some things certainly she cannot do
34:40But instead I'd rather focus on the things we can do
34:44I can play almost everything with my right hand
34:49With my left hand
34:51I play with just my one finger
34:55And my right hand
34:56I play with just my one finger
35:00I play in concerts
35:02At least three times a year
35:07One thing that really I guess gets into my skin
35:11Is when people stare
35:14It's just really annoying and creepy
35:17When people just stare at you
35:20Like that
35:22So that's one thing that kind of bothers me
35:25I would rather a person come up to me and say
35:28Hi, what's your name?
35:31There was one instance where a child said
35:34You know, why do you look like you look?
35:36And she's like, well, why do you look the way you look?
35:40I would say on a regular basis she does feel left out
35:44It's hard for her to keep up
35:46There are some moments where I try to be positive
35:49But I just try to stay positive
35:55I've really adjusted my mindset over time
35:58That rather than saying, oh, she can't do this
36:00She can't play volleyball
36:02She can't play piano
36:04We're just not going to do that
36:06We're going to give it a shot
36:12Growing up, my mom played volleyball
36:18I wanted to be like my mom
36:20We did find a league where it's for more like beginners
36:26I'm a very good server
36:28I'm trying to touch the ball more
36:30It's just hard for me
36:32She's done very well to hold her own out there
36:35I think she is the shortest one on our team
36:38And she certainly is not the fastest one on our team
36:41But she's kind of figured out her niche
36:44Today I'm actually going to play
36:46In the last men's volleyball match of the season
36:49This is our last game
36:51This season and last season
36:54We have not lost a single game
36:57I don't get super nervous
36:59What I get more nervous about is tripping
37:01Or falling
37:03Because for me it's really hard to catch myself
37:06So right now we are going to my volleyball game
37:10And I'm really excited
37:19One, two, three
37:21Strikers!
37:28I'm very proud of Grace
37:30She makes the most of her ability
37:33To see her out there competing
37:36It really warms my heart
37:38I just love to see her out there giving it her all
37:41I'm going to win
37:43I'm going to win
37:45I'm going to win
37:47I'm going to win
37:50I'm going to win
37:58She is tough
38:00She was able to get in and figure out her serve
38:03They are great teammates
38:05Some are a little overprotective
38:07When the ball comes they want to take it
38:09But she can take it
38:20Good job
38:26We just won our championship
38:28It was a lot of fun
38:30And I'm really happy
38:32Because this is our second championship
38:34That we were undefeated
38:36Good game, good game, good game
38:47I think I've just realized
38:49Okay, there's nothing I can do about it
38:52And I can't really change the circumstances that I have
38:55So you just have to make the best of it
38:57Good job guys
38:59Let's say it loud and proud
39:01Strikers on three
39:03Strikers!
39:05Strikers!
39:0917-year-old Liam was born with an extremely rare condition
39:13That affects less than 15,000 people worldwide
39:16He can breathe on his own during the day
39:18But not when he goes to sleep
39:21Doctors believed he wouldn't live for longer than six weeks
39:27It was like, oh right, okay, game on
39:35You alright?
39:39Give me your foot mate
39:42Liam has a condition called
39:44Congenital Central Hyperventilation Syndrome
39:47Or Ondine's Curse
39:50Ondine was a fairy
39:52And he was cursed that if he ever fell asleep
39:55He would die because he wouldn't breathe
39:57So we rely on a machine to make him breathe
40:00And without that machine he wouldn't be alive
40:06Congenital Central Hyperventilation Syndrome
40:09Affects Liam's atomic and nervous system
40:12Which controls functions such as blood pressure, heart rate and breathing
40:16And can increase the risk of organ damage
40:19Especially to the brain
40:22If you ask me if I had a good night's sleep
40:25The answer is no
40:27Not since the day he was born to be quite frank
40:30You don't know from one day to the next
40:33One minute to the next minute
40:35Whether he's going to have a seizure, an episode
40:38He's going to get tired
40:40He can collapse on you at any time
40:42I always remember one senior nurse saying to me many times
40:46It will get easier as he gets older
40:49That is the biggest load of rubbish going
40:52Because it does not get easier
40:54If anything it gets harder
40:56You go from having what you think is a normal child
41:00To someone who actually gets rarer by the day
41:02Because he's surviving so long as he is
41:05Every night Liam relies on a ventilator
41:08To keep him alive while he sleeps
41:10A carer is also on hand to watch over him
41:13In case anything goes wrong
41:19Basically Liam's sleeping arrangements are
41:23The electric bed which has three positions
41:27In order to give him some quality of sleep
41:30There's a plate underneath the mattress
41:32That will sense after 12 bursts of fitting
41:36The idea is that this ventilator supplies positive pressure
41:41So that his lungs are forced to exhale
41:43If ever anybody has had the night dream
41:46Where you've fallen off a cliff
41:48That's your body telling you
41:50Your phrenic nerve is alarming
41:52And it makes you take a deep breath
41:54So equated to that, that's his condition
41:57He has that all the time
41:59It's also his room
42:01So you've got his PlayStation, his sat TV
42:05Then obviously Liam's big forte is his Lego
42:09Which is all around the room
42:14We are hoping to put a hobby trap up the lot for me
42:24His mental state is unknown
42:26To be perfectly frank
42:28We don't know which is the spectrum
42:31So where it starts and where it finishes
42:33He can build these incredible Lego models
42:37And there are thousands and thousands of parts
42:39And yet he can put that all together
42:41I do build them all my own
42:44I just get down to the wire
42:49He'll check the Lego websites
42:51To see if there's any new ones out
42:53And you know full well what's coming on
42:55Either his birthday or Christmas list
42:59Which is your favourite one, Liam?
43:02All of them
43:04All of them
43:12Liam's 17, nearly 18
43:15So it's a big birthday this year
43:17He's an annoying, grumpy teenager
43:20So he's no different to any other teenager
43:23But he does have a sense of humour
43:25He's very caring
43:27He's got a really soft side
43:30He has one older brother
43:32Three half-sisters
43:34And his two older sisters
43:36They've both got children
43:38So he's got eight nieces and nephews
43:42Me and Liam, we do a lot of things together
43:45We play with the trains, build Lego
43:50Wasn't it the Flying Scotsman?
43:52He loves trains
43:53You ask him anything about trains
43:55He'll tell you, yeah
43:59Some people don't understand what he says
44:02But I do, you've just got to take a bit more time
44:05And proper listen to what he says
44:07To understand and fully be aware of what he's saying
44:13Life expectancy-wise for Liam
44:16Nobody knows for sure, but
44:19You cannot regret or have any remorse about
44:23The life he's had, because he wouldn't have had it
44:26If we'd have listened to some of the doctors
44:29By rights, he shouldn't even be alive now
44:31We never really thought we'd get this far
44:34Liam's living proof that there's always hope
44:37The future for Liam, I would say, is
44:40It's not going to be totally independent
44:43But with us two, it's going to be as independent
44:46As we could possibly make it
44:49It's 18 years since we started this journey, you see
44:53I don't regret any day of it
45:05We got married six years ago
45:08On the beach in North Carolina
45:10When we found out we were pregnant, we were very excited
45:13At a routine ultrasound, Caitlin and Brian
45:16Were given some shocking news
45:18We went for the post-meeting with the doctor
45:23And he showed us the silhouette of the lungs
45:26And where the heart would normally sit
45:28Between the lobes of the left lung
45:31And then he pointed, like, three inches to the left
45:37And showed us where her heart had grown
45:40And that's when I said it out loud
45:43Her heart is outside of her chest
45:46She had probably one of the, if not the most
45:49Rare congenital heart defect
45:51And that is a defect called ectopiocortis
45:54We went online and half don't even make it to birth
45:57So, yeah, there was a very slim chance of her making it
46:02The only chance you have of treating this successfully
46:06Is having an integrated approach where you can gather experts
46:11Specialists at the Mayo Clinic used fetal MRI pictures
46:14To create a 3D model of Ciaran before she was born
46:17In what was a medical first
46:20They printed these out layer by layer over 30 hours
46:25And so you can see the heart is entirely outside of her body
46:29And her liver was also outside
46:32Ciaran was born in an emergency C-section
46:35A team of 60 doctors gathered to stabilize her
46:38Due to the acute nature of her condition
46:41There was a high nature that she might not survive the operation at all
46:46I had agreed not to hold her
46:49So that she could go straight into surgery
46:52I got a glimpse of her as they walked by
46:55And it took every part of me not to call out and say
46:58Hold on, wait, I changed my mind
47:01That was really hard
47:03In just five hours, surgeons had placed Ciaran's heart
47:06Back inside of her chest
47:09And one week later, Caitlin was finally able to hold her baby
47:12For the first time
47:13It takes a team of at least four people
47:16To lift your baby into your arms
47:19Because they have to move the breathing tube
47:22And they have to make sure we don't lose wires
47:25And pick lines and tubes and drains and such
47:28And so I think I held her for maybe 20 minutes
47:31Before she got irritated and had to go back to her bassinet
47:34Are you excited? Are you ready?
47:37It ended up being five months
47:40Before she could finally make the journey back home
47:43Now 18 months old
47:46Doctors are delighted with Ciaran's progress
47:49But she will need much more surgery in future
47:52With her heart being outside
47:55Her lungs kind of filled the space
47:58That normally would have been taken up by the heart
48:01So when they put the heart back in
48:04The lungs just didn't have enough room to fully expand
48:07So they put the trach in
48:10The trach is an artificial opening in Ciaran's chest
48:13And in Ciaran's throat, which helps her to breathe
48:16So if we don't deflate the cuff
48:19Before we put the Casimir valve on
48:22Then she can't breathe
48:25Just take off the Velcro from one side
48:28Bring the loose end around
48:36It'll come out, we're guessing in the next three to six months
48:41And it's all dependent on her
48:44How she handles the next few steps
48:47It's uncharted territory
48:50Despite allowing her to get more oxygen
48:53The trach means that Ciaran has been primarily fed through a tube since birth
48:56And has only just started learning to talk
48:59As a result, she's seeing an expert
49:02To help her catch up with other children her age
49:05We were initially working with her feeding
49:07She is just starting to eat
49:10So we're trying to get her to play with the food
49:13To taste the food
49:16What do you think of that feel?
49:19We also are working on communication
49:22Being a little girl, her throat is very small
49:25So we don't have a lot of air volume
49:28That can go through there
49:31But she did an awesome job today
49:34With a yeah and really nice volume
49:37She hasn't heard her voice or played with her voice
49:40Except for the last couple of months
49:46Yeah, she should have a pretty normal life
49:49Be a normal kid, live a regular life
49:52Scrape her knees, get dirty
49:55Ride her bike, play games
49:58Join choir
50:01Run for student council
50:04Get her driver's license
50:07Become a cardiac surgeon
50:10Kisses
50:13We want to raise awareness about
50:16Children born with a congenital heart disease
50:19And one of the nice things too
50:22About this whole ordeal is that
50:25We know that we're helping the medical field
50:28And families in the future
50:31Were you given a diagnosis that you have outlived
50:34And want to tell your story?
50:37If so, get in touch
50:40And if you enjoyed this video, please like and subscribe
50:43And let us know in the comments