“Literally A Ticking Time Bomb” - 5 Rare Heart Conditions | BORN DIFFERENT

I was born with my heart outside of my chest

I think a big misunderstanding is that I'm really, really fragile or that I'm always in pain

I recently had a heart transplant. I now show people my old heart and they say it looks like cookie dough

I'm wearing my heart on my sleeve because this keeps me alive. Without it, I can go back into heart failure

If I'm not on this medication, I die. My heart could explode at any time

When I was 15, my heart rate got to 225 laying down

They found something wrong with my heart and diagnosed me with Wolf-Parnes and White Syndrome

I was cured and paralyzed by the same surgery. Do you remember this picture

Do you remember this one? Yeah? My condition is called Pantology of Control

It basically means that my heart is outside of my ribcage, so it's not protected by my ribcage anymore

There's no known reason why Versavia's heart is outside of her chest

we don't know what caused this condition. This one, this one is very... gosh, he was

about like a week old. They just pulled out the feeding tube of your nose. I remember I was crying

so much about that because you, you was crying a lot and that was, that was hard times really

I found out that Versavia have a condition with her open heart when I was 26 weeks pregnant

and it was it was a shock for me I remember I fell on the floor right in the hospital screaming

that because I thought she's going to die because this is what they thought they told me

They told me she would die and will not survive. They told me that I need to get an abortion

And they called to not force me, but recommend it. And of course, I kept her because I loved her

People often think that since my heart is outside of my body, that I feel pain there, but I don't

Seeing my heart outside of my body does not necessarily feel like anything because I'm used to it

except it might feel like something to other people, but not to me

So this is my room. This is where I draw and do all my hobbies and do my homework

School is nice, but sometimes it can be hard because the people that know about my condition try to use it against me

or make jokes about it in a mean way. So sometimes it could be more difficult

Other times it's still okay. And other times it's okay, yeah. My condition affects my daily life because I can't do some normal things

Like I can't run or I can't walk too fast and I can't go up and down the stairs because my oxygen drops really, really low

I have to use this when my oxygen levels go really low because sometimes they do go under 50

Or when I'm having an asthma attack. I think a big misunderstanding is that I'm really, really fragile or that I'm always in pain

But I'm generally really happy in life. My mom and I decided to start posting on Instagram about my condition

It's important for me to spread awareness because there are a few others out there that also have similar conditions to me

and if they want help from like doctors on it, people should know more about it

so that they would learn how to help it or treat it or something along those lines

She's a really good friend. She is so beautiful. She is cool

She never gives up. I'm very proud of her

I'm proud of her strength and I love her the way she is

I'm grateful for proving the doctors wrong, that I can still eat and walk and be alive

I would like to push my limits on what I can and cannot do because I want to inspire other people

and because I want people to know that I am more than just my heart and I'm beautiful just the way I am and so are you

I was born with six different heart defects which basically means I was born with half a heart

and multiple holes in my heart and leaky valves Throughout my life I have had a total of

five open heart surgeries, two pacemaker surgeries one emergency lung surgery and a combined double heart and liver transplant

with over 200 minor surgeries When I was 18 I endured multiple surgeries all at once

which resulted in me going into heart failure at age 19. When I was 22, I was diagnosed with liver disease

A lot of people think that I just got bad luck and developed liver disease on its own

but liver disease was actually caused by my heart disease over time

so it is a secondary effect due to my heart disease. When I was 22, I got the flu, and that actually deteriorated my heart

They were going to go down the transplant route. It's the only thing that could have saved my life

So although the heart and liver has never been performed in New Zealand on someone born with heart disease

they decided to take the risk because the liver can deteriorate quite fast

In my case, I was waiting for both organs, heart and liver, which had to come from the same donor

which is why I waited about two to three times longer than a normal person

I received my call at 6.30 in the morning. I just knew my gut feeling that call was the call and I was super excited

this was my only chance of survival. I knew that a transplant is a pretty big surgery

considering I was having both organs done. At one point there is just a machine in the middle of my chest

you know, keeping all the rest of my vital organs pumping while they take out my heart and they insert my donor's heart

They replaced my heart first before they got to my liver. I can finally talk and I ate for the first time today

I was in hospital for a total of 53 days in ICU, 14 days in ward and I was in cardiac rehabilitation centre for 21 days

Good girl. Although I had like a transplant, I do honestly live a normal life of being able to breathe, do everything that a normal person could do

So now I just have no limitations and I'm able to study and continue on with my career and my future

My heart scar goes from the top of my chest down here

Due to all the surgeries that I have had I actually have a whole chest and stomach full of scars

which I absolutely adore and love I show them to everyone This scar here is from my liver transplant

Here in New Zealand, due to religious and cultural beliefs we actually get the option, unlike any other country

to keep our organs so we can bury it with us when we pass away

What I was initially going to do was to bury it on behalf of my donor

However I recently found out that I can use it to educate people, educate them on

the importance of organ donation and spread the awareness of heart disease

So I'm going to show you my heart. I store it up here in my wardrobe

And this is it So one of the most main questions I get asked is why is it so large or if a human heart is this size Now your heart is the size of your fist but your heart is actually a muscle so when it is damaged or overworked it increases in size and it swells

Also my opinion, I think it looks like cookie dough. most people are surprised that I actually keep it in my wardrobe

because everyone assumes that organs or body parts actually belong in the freezer

but in my case it doesn't growing up with heart disease I thought it was super important

to educate people on a disease known as the invisible disease I was hoping by sharing my complete story

the good, the bad, the raw that it will spread the awareness out on heart disease

and actually how serious it is and how much it can impact someone's life

My heart is one of the biggest things to show because of how large it is

It obviously shows how damaged the heart was and just what heart disease can do to somebody

There's been quite a few negative comments. They'll comment or tag their friends and be like

Ooh, yuck, that's disgusting. what type of person would keep their organs and stuff

but they say that without looking at my other videos without actually knowing what I have gone through

and the reason behind why I am showing my heart and without understanding the work that I'm actually trying to do

The positive things that's really nice to see it really warms my heart with all these parents

who have children with heart disease and that my story gives them somewhat sort of hope

and it's one of the main reasons why I do it. I am just preparing some snacks for when Shard comes over

and then we're going to sit down and look through old photos and video of my journey

Shard supports me in a really big way because when I'm sick with the flu and all that stuff

he'll make sure that he is there catering to, you know, all the little things, big things I need

It's a sensitive topic for him, but because it's such a large part of my life

I think it's super important for him to see what I have gone through

How do you feel when I show you these type of photos? Obviously, stuff that you were never able to see

It's unexplainable. Pretty abnormal. But it's also always a reminder. Just to be like, got to be careful

Got to be careful, yeah. Life can change in any second, right? That's the thing, though

You have to be healthy now. I try. Anything we do, something bad can change

You always have to be ready to go. Well it's important for me to actually share these photos with you

because it lets you know and it tells you a bit obviously about my journey

and the importance of heart disease and how it actually affected my life before I met you

Make sure that it's possible to actually survive things like this. Look how far you've come

and still going. For anyone going through transplant, the way that I got through it was a positive mindset

I know it's a super daunting and scary time, but find every little bit of positivity you can

because going into it with a positive mindset will end up bringing a positive outcome

That's something that I've kind of lived by. I'm going to change out my medication

I change out my cartridge, my tubing, and my pump every three days

This is where all of my stuff lives, day-to-day stuff. I'm Jerry. I was diagnosed with idiopathic pulmonary arterial hypertension and congestive heart failure

Pulmonary arterial hypertension means that the artery that goes from the lungs to the heart is really plodded

The right side of the heart gets enlarged because it's working too hard, and then it starts to fail

So I am technically in right heart failure. Now it's pretty secure

I have secured it. There's nothing lifting. I get my medication out

This is still a pretty full bottle. I clean it before I insert anything into it

I twist this off. This is what goes in my pump. And that's loading while I am opening my tubing

This is what it looks like before it goes in my arm. There's a needle right there

So then I hook it up like this, turn it, lock it in

And then I hit done. It's kind of crazy that I am like reliant on something

that is on the exterior of my body. You rely on your organs, but like my medication

keeps me alive. Having my heart essentially on the outside of my body

gives me a lot of anxiety. My condition is not curable. There's no explanation for it

We just have to manage it the best we can. I've always been really healthy

I would say that I was pretty average up until I was diagnosed

When I was diagnosed, they told me if I started medication immediately

then I could probably get three to five years to live. So I'm standing when he's telling me this

and he's like, you shouldn't even be able to stand with how severe your heart is

You need to start treatment immediately or you're gonna die. I get pretty choked up thinking about this

Finding out about my wife's condition that she was diagnosed with, I just didn't want to believe it, and I couldn't be there for her because we have the two boys at home

Just felt completely helpless. From the day I checked myself into the ER to the day I was hooked up to my pump, we're talking three weeks

Look up. Close your eyes. Close your eyes, please. It was really hard to adjust, especially because the line was coming out of my chest

and the boys aren't old enough at this point to understand anything

So I was so nervous about them pulling it out. I was scared it was going to fall out

I had never been sick, and now I'm like super sick. I'm wearing my heart on my sleeve because this keeps me alive

Without it, after four hours, I can go back into heart failure

I'm on medication 24 hours, seven days a week. I started sharing on social media because when I was diagnosed

I was looking for somebody like me, and I couldn't find a lot of them

So I wanted to be that person for other people. When I was diagnosed, I was told that if I didn't start treatment immediately, I was going to die

After 10 months on the pump and being in the hospital six times because of infection

I started with this subcutaneous pump. It's been working really well. I also started a clinical trial, and it's been really exciting so far

I wanted to be the person that showed them they could still go out and live their own lives

and be normal people, even with a condition as serious as the one I'm dealing with

I'm going to take my pump off, and I'm going to detach for a little bit

The benefit of doing this really is just because I hate being attached to a pump

I like not having to wear a pump all the time. I like the freedom that I feel

I feel normal again. It's like Cinderella's slipper. I only get it like a couple hours before I turn back into a pumpkin

Now it's waterproof. I'm pump free, ready to go. I feel like I have come such a long way

from that day in the hospital. I would have never thought that I was gonna put my toes

back in the sand after being diagnosed and being told that I could die

We love the beach and I'm glad that we made it back here

I feel like it made me a lot stronger and I feel like it's really molded and shaped my personality going forward With the clinical trial I on now the future hope is that it be a cure that it going to give me a lot of years We seen a lot of miracles that have

happened in my body. I've survived a lot. My joke is I am a cat with nine lives and I think I'm

probably on my sixth life at this point. Marfan syndrome is a rare genetic connective tissue

disorder that affects multiple aspects of the body. It mainly affects the heart, eyes, skeletal

system. I deal with an enlarged aorta. For me personally, it gives me a lot of chronic fatigue

every day. Marfan syndrome is an invisible illness for the most part, but it is also

life-threatening. The connective tissue in your body that holds everything together inside is weaker

with my heart that is the most dangerous area i am on medication to help my heart rate go down

knowing that i am taller than everyone and have long limbs has been a huge confidence issue

i feel that i am viewed differently than other people i am six foot three growing up i was

always the tallest in my class. I also have scoliosis, so kids would just see that and think

you look weird. Remember this? Oh yeah, little baby Grace. Look at how tall you are, and I just

figured because we had a tall family, but when Dr. Howard diagnosed you, it all made sense

I was at my pediatrician checkup and he was looking at my long arms and limbs and fingers

and he gave my mom a weird look. She is an echocardiogram technician so she just kind of

knew. I thought I know how to take care of this girl and we can do this together. As far as the

hurt. Of course I was worried every day, all day, because I knew too much. A common occurrence in

Marfan syndrome is aortic aneurysms. The aorta pumps the majority of the blood from your heart

Because it is made up of connective tissue, it is more likely to tear. So that is the most

stressful and anxiety inducing part just having that impending doom of my heart could explode at

any time it's literally a ticking time bomb for my parents it has been hard to wrap our heads

around it and accept i have already gone through so much because of marfan syndrome but there is

more to come. It's always in the back of my head. Even now, you know, I still worry. I like to still

be in the background, kind of making sure I know what's going on in case something really bad

happens. I know there's some internal feelings and hard paths that we have been through, and

I'm sure there's more ahead, but we'll get through them because I know she's strong

I decided to start sharing my journey on social media because I know that the best that I can do

is talk about the condition and spread awareness. A lot of people comment that they have Marfan

syndrome and they have never met another person with it and realizing that they are not alone

Today, my friend Ting is joining me at our local bar as I go on a blind date for the first time

How are you doing? I'm good. Oh, it's so good to see you. You too. Come on upstairs

Okay. Ting is 4'11". Of course, my best friend is very short and I am very tall

I think I want to wear this sweater. Oh, look at this

That's so cute. It will match like my sweater. Yeah. Cute. How are you feeling about the date

I'm excited. I'm a little nervous, but I'm excited. I hope it goes well

I would say that my dating life has been affected by my condition because I didn't want to be seen

as different or weird or complicated. Ting has been very supportive along with all of my other

friends. Do you have any ideas of what you'll talk about and have you thought about maybe how you'll

bring up your Marfan syndrome? Maybe when we're talking about like hobbies I can mention my

advocacy work oh okay yep and then kind of go from there and explain i'm gonna go get dressed

okay nice i'm always um i guess protective i hope that her blind date sees her for who she is and

not just for her syndrome that she has i just hope that she comes out happy and has a great experience

oh my goodness you look so cute i love the fit thank you are you ready to go yes okay let's go

I'm always nervous to tell a date how serious my condition is. I just hope it doesn't put her off

I don't know very much about my blind date today. I don't know anything about what they look like

where they're from, anything like that. I'm feeling a little nervous, but I'm mostly just

excited to meet somebody new and hopefully have a good conversation. Hi. Hi. How are you doing today? I'm good. How are you? Good. Are you

used to this situation? Have you been on camera a lot before? Yeah. I kind of do like social media

like content creation. Nice. And some advocacy work with like, it's called the Marfan Foundation

for Marfan Syndrome, which is like what I have. I'm not sure if I've heard of that before

to be honest. Yeah. Most people don't know what it is. Usually when I tell people that I have

Marfan syndrome people often do not understand what I am saying or what it entails it is important

to me for especially a partner to know about what I may experience and what I have experienced in

the past it affects like the connective tissue so everything that like your body is held together by

is kind of loose, which is why I'm like so tall and like my long fingers and limbs and stuff

Creating connections can be really hard because I just kind of want other people to like look past

it and realize that there's like more to me, you know. At the end of the day, like the people that

talk to you and get to know you as a person are like no matter what, those are the best people

for you. Definitely. Yep. All right, you want to knock off with me into the sunset

I hope that my story inspires people to take a good out of bad situations and to look on the

positive side of things while also normalizing chronic illness and disability in our society

Hey Grace, how did your day go? Hey Jane, it went really well. Oh, did you tell your day about your muffins and Joe? Yeah, it came up really naturally and I think

She took it really well. Aw, that's awesome. I would say that my confidence has definitely improved

especially within the past few years. I have accepted that this is my life

and this is something that I was given. I hope that sharing my story can help people realize that people with invisible illnesses have a life worth living

This is my formula. I have this condition called gastroparesis, which makes me unable to really digest food

So this is a feeding tube and the tube goes into my small intestine

Because I was paralyzed before getting diagnosed with this, I was already like more used to

that routine and so this has just been added on to it

I wake up an hour earlier now just with all my other medical stuff too

Tell us a little about the heart symptoms you started experiencing when you were younger

When I was 15, my heart rate got to 225 laying down and my whole body was just

feeling so weird. They did an EKG and they found something wrong with my heart and diagnosed me

with Wolf-Parkinson-White syndrome. So it's basically an issue with like the electrical

system in your heart. It's episodes of really rapid heart rate and a normal heart beats like this

and mine was beating like this and like kind of like all over the place. A few years after my

diagnosis I was going back to a boarding school and I really wasn't feeling good and I knew an

episode was coming. I woke up in the back of the airplane getting CPR and oxygen. I was terrified

I was rushed to the hospital and I just remember like the beeping was non-stop

The surgery I had, what they did was they had like wires and they went in through my neck and

like my groin. I had like an extra pathway in my heart and they kind of just like

got rid of it, the surgery cured my heart. I don't have Wolf-Parketson White anymore

When I woke up from surgery, I realized something was wrong. My legs were in excruciating pain

And within the span of three days, I was paralyzed from the waist down

Basically what happened while I was in surgery, I had an allergic reaction to the anesthesia

and it caused my brain to disconnect the pathways in my legs. I think hearing that news at first I didn't want to

believe it. I was like there's no way this could be happening. I was going in

to get something fixed and I come out and I've lost so much. I can't move my

legs. I'm in pain 24-7 and I think hearing that was just like I'm not gonna

to let that happen. I'm going to walk again. So this is my standing frame. I use this every day

and basically this gets me into a standing position. So I started going to this paralysis

gym and they have machines there and one was called an exoskeleton and with the exoskeleton

It's basically this like robot that kind of like walks for you

Here are some videos of me in the exoskeleton machine. Once I had more core strength, I was able to start using that

And honestly, it was the best feeling in the world. I wasn't doing it on my own and the machine was doing it, but I was still getting that walking movement

So I started this GoFundMe to help me get the tools I need to walk again and support myself

I'm gonna be using the money for an exoskeleton and then hand controls for a car

The exoskeleton is so important because that gets my legs in the walking motion

Some say with that, that I'll be walking, and then others have just said, you're not gonna walk again

When they said that, I was like, that's not true. I know I'm gonna walk again

I know I can do this, and I'm gonna prove them wrong

Let's do some standing. I was like, you know what? I want to just start standing and maybe post some videos about it and see where it goes

And then I started getting views on it and encouragement, and that really helped me a lot

I put a lot of energy into my social media accounts. I post a lot on there on my recovery and journey and walking again

When I was at the gym, they had this walker with actually a piece of wood that blocked

So I was able to use it, and I was like, oh my gosh, I want to make my own and work on standing

I do like daily kind of things on my Instagram. I just kind of see how long I can to go

My friend Enrique is coming over and I'm going to try and break my record for standing time. Hi

How have you been? I'm good, how are you? Good, good. Just been, yeah, going all over the place

Been in Seattle for a few days. So I'm trying to set a new standing record

Would you be down to film it? Yeah, of course. We can definitely give it a go

My current record is four minutes. I am hoping to break it and do five minutes

I think it will be challenging, but I think I'll be able to do it. All right, let me know when you're ready

I'm ready. Three, two, one. All right, and we're up. I met Enrique through Instagram

He slid into my DMs and was like, hey, I'm also from Washington

I was like, oh my gosh. And yeah, we started talking. Alright, we're at 25 seconds

I saw she was playing for the Kraken sled hockey team and I thought that was super cool and interesting

And I went to a few practices with her and we've just kind of been friends since

We are coming up on the two minute mark. Just kind of seeing the strength that she has

to keep pushing forward and just live her life, regardless of any situation that's been thrown at her

definitely is inspiring. You're doing so good Bella. Three, two, one, five minutes

Oh my gosh. Oh my gosh. Today, Bella set out to break her record with standing

She absolutely crushed it. How does that make you feel? Tired. Tired

Very tired. I can't believe I did it. I'm very proud of myself

There's nothing holding her back from walking again. Let's go take. Oh, yes

Let's go. For so long, I had such black and white thinking and just like, oh, I'm never going to get better

And then I was like, I only get this life once. Why do I want to live it

Just thinking like I'm never going to walk again when I could get up and try

Three years ago, if I saw where I was today, I would not believe it

I have come so far. I did not think I would be able to stand five minutes on my walker

Bella's done an amazing job overcoming just every circumstance life has thrown at her

She finds a way to make it work and I look forward to seeing the progress she makes going forward

If anyone watching this is going through what I'm going through, just remember, even on the hard days, look for the light and that it does get better

You only get this life once and it's precious. It may seem like times are so hard and you just want to give up and you don't see a point

Just got to keep going. You decide how you want to see a situation and move forward

I know I'll walk again