P249943 TeenDefyOddsComp Youtube

The bullying will never stop

People, they're just mean. The world's mean. So I've just got to toughen up and get through it

I'm Alyssa, the teen who constantly smells like fish. My rare condition caused my brain to fall out the back of my skull

It takes me hours to get out of bed every day because of the pain. Other days, I can't get out at all

Progurias are a rapid aging disease. I'm 18 years old. I am 3'8 and I'm 35 pounds

How old are you? 19. People have said they can't tell whether he's 5 or he could be 55

He's quite a gentleman, he's quite old-fashioned. I was born with uncomfortable hair syndrome

The implications that the condition comes with, like, brutal bones and teeth and fingernails

My rare condition causes my bones and teeth to break with ease

A lot of people have accused me of faking my disease. I was born with a condition that causes my arm to swell

Some of the worst things people have said, they called me the hole. I am just a beautiful person. Nothing is ever going to be able to affect that

The name of my medical condition is trimethylaminuria. It makes me smell like fish

My mom knew when I was little that something was wrong, but they never found a name for it until I was about six, because it's so rare

she was always sweating really bad i couldn't put clothes on her overnight because she would

just sweat through them her doctor looked into it and called me one day and was like hey i think we

might have something here and he sent her to do some testing and it came back that she had the

trimethylaminaria. So trimethylaminaria prevents certain proteins from being broken down in your digestive system and when your body can't break them down

they sit basically sit in your gut and rot causing an odor. I started

kindergarten and started being bullied for it. She was made fun of a lot, teased

by a lot of the kids. Let's be honest kids are pretty brutal. Calling her fish

girl and all sorts of really mean names. There's always somebody, even in high

school, there's always somebody who notices it. But they never really say it

to my face. The bullying will never stop because people, they point out every

little flaw about you. You know, people, they're just mean, the world's mean. So

just gotta toughen up and get through it. There's no treatment really. I just can't eat certain foods and I have to like take really good care of like my body. Like wear perfume, deodorant all the time. Take showers every night. The smell comes out all the time, especially like when I'm sweating

so all we can do is making sure she's not eating a lot of green leafy vegetables

we have completely cut fish out of our diet there's no milk it's all almond milk she can

have tree nuts just not like peanuts let's put it with me that'd be cool you just don't get cheese

what today cheese is the best part it's really hard to find things i can eat especially when

going to like a restaurant. Usually we end up at like a seafood restaurant, which sucks

But usually I eat like chicken tenders. That's about it. So what are you going to do later

Um, I think Jordan's going to come over and we're going to play softball. It took a very

long time to find my confidence. Hey Amy, do you want to come play softball with me? I suppose

It really started when I started playing softball. I was on a team, they didn't really care about the smell or anything

They wanted to help me be the better softball player. And that was definitely the turning point

That's where I really fell in love with the sport and really started to buckle down and

wanted to play and knew that that's what I wanted to do

I worked my butt off on the softball field. I work my butt off in my pitching, and I do my very best in school that I can

That got my palm. My whole palm. She's got a lot of talent, and she's really starting to love the game and getting good at it

She's got a lot of drive. She wants to be better than everybody else, but she also wants to be better than her own self

I think it offers her a release to get her anger and her aggression out when she's frustrated

I don't think I could deal with the bullying and all the craziness that she does every day

and still be able to hold my head up. Situations like going to softball tryouts or, you know, being on a team, job interviews

Those situations really make me nervous because you never know how people are going to react to it

But I know just to get through it. Hey Jordan. You ready to go play softball

Yep, I'm ready to go play softball. I like about the best about Alyssa is that she can be mean but nice at the same time

I think of her as a confident person. heard that right. My advice for kids that are being bullied for anything would just be let it

let it go. Just toughen up and get through it. I have to live with it. It's never gonna go away

I just know that I have to surround myself with people who don't notice it. My hope for myself for the future is to you know go to college. I want to play for Alabama

I want to you know get a really good job and I want to you know advocate for myself for the rest

of my life. Morning. You okay? Yeah. Thank you. And how are you feeling? Soar, but I'm

all right. Chiara malformation is a brain condition. My cerebellum, which is the back

part of my brain, is slowly slipping down into my spinal c through the opening in

the base of the skull. I eat my breakfast lying down because I'm in so much pain in the mornings

that I can't sit up. I slowly have to bring myself up on the bed so I have to eat like this but it

can get quite uncomfortable. A really bad day I will not get up whatsoever, I'll be laid down the

entire day. It mainly hurts at the back of my head but my entire body usually hurts. Every day you

walk through the door and it just it just emotional I sorry you walk through with anticipation that it going to be a good day talk to a two minutes and you know it not going to be like that It not going to be a day like that The headache started when I was seven

I didn't think anything of them as they were, barely anything. I was skiing when I was 14 and I felt really poorly that skiing holiday

Yeah, you did, didn't you? We didn't really notice much signs, did we, when you was young

When I was 14, the pain became consistent. I just felt more and more pain in the back of my head, my neck, my shoulders, down my spine

I was getting weird tingling sensations in my arms and legs. She went from being a kid that does everything, skis, runs, love dancing, lying in bed 90% of the day

It was quite shocking. We took her to the A&E three times and on the third time Emily was just in so much pain

They didn't know what to do to help her. I was finally diagnosed in October 2021 when I was 15 after an MRI scan, which me and my dad had to fight for

They kept saying to me, come back when it's worse. And my dad just said, it can't get any worse

She's bed bound. She can't do anything. He wouldn't leave until they looked into it more

It was a big relief when we got diagnosed because we knew, didn't we

We had something, the reason why she was getting all these headaches

and we had all these question marks before. At first I didn't understand the scans very well

When I did start to understand, I noticed how severe the Chiari was. I did realise that my brain was herniating quite a lot

This was my first ever MRI and my brain went all the way down

You can see the white bit around my brain, it's grey, there's barely any of it

But then on this, after the decompression, how much more of that there is

The comparison is amazing, isn't it? I had decompression brain and spinal surgery three months after being diagnosed

They remove a bit of my skull, a bit of my spine, remove a bit of my herniating brain

and replace the brain lining with a skin graft from inside my head to expand it

It allowed fluid to flow around my brain, relieving the pain in my head, my neck pain, my back pain

However, a lot of that has come back since. My more recent one here, it's all slipped back down and there's barely any fluid around my brain again

This is my brain stem. I believe that goes down into the film. And that's the bit they're going to cut

They're going to cut, yeah. I'm hoping to have the film terminal sectioning surgery in three or four weeks' time

I have to go to Barcelona for this surgery as it's not done in England and not performed under the NHS

I am having to pay a lot out of my savings, which is quite upsetting as those could be used for my future

But I'm happy to spend them on this as hopefully this will give me my future

I play a lot of netball a week. I would do training two times a week, sometimes three

When I was 17, roughly a year after my surgery, I just couldn't handle the symptoms that were coming back anymore

So I have to stop. I'm hopeful about the surgery. Hopefully it will give me a new chance at life

I'm more nervous for the fact if it doesn't work and if it doesn't help me

as it seems to be my last chance to actually help the condition

Hiya, how are you? I'm good. How are you doing, Emily? How are you feeling? Are you getting any worse or how are your symptoms

I'm struggling at the moment. It has been a lot worse the past few weeks

I first met Margot on a Facebook group where people talk about their Chiari

and people who have had this film surgery or are hoping to get the film surgery talk on there

And she is a big advocate for the film surgery. So they go in and they make a one-inch incision

at the base of your spine and they clip the ligament and it releases the tension on the spine

Many people get their neurological symptoms reduced. In my daughter Caroline, hers was like a tight rubber band

We had to get her handicap pass because she could barely walk. And four days after surgery

she was walking up a flight of stairs, not even holding onto the handrail. My other daughter's

headaches were gone. She also had swallowing issues where she felt like she had something

stuck in her throat. That sensation was completely gone. Very miraculous for my kids

That is incredible. Gives me a lot of hope hearing that. Think of a positive outcome. Think of my kids. And hopefully that will be the case for you as well

Yeah. And you're definitely in good hands. Thank you so much for talking to me about this

I wish you the best of luck. Please keep me posted. Will do. Thank you

Okay. Bye. Bye-bye. Hello. Hi. How are you? I'm good. How are you

I'm good. When Em's having a bad day and I'm coming over, normally she'll be up here

I'll just walk in her house. I'll come upstairs and I'll just sit here with her

It's just really nice to know that we can do that. Over time, I have unfortunately lost quite a few friends

People have accused me of faking the condition. A lot of my friends, unfortunately, didn't believe me

I know that my condition's real. I know that I struggle with it. And I don't blame those who do think that as they don't experience it, so they don't know

But I just hope through me spreading the awareness that more people understand are not as naive about chronic illness

I decided to make a TikTok account about my condition and try and spread awareness

I've had many good reactions, positive reactions. And a lot of people come back to me telling me that I've helped them

Which is crazy, that's an amazing feeling, that's what I want. Bringing the Chiari situation to the forefront of as many people's lives as she can

it's going great, so I'm super proud in that sense, super proud. I just want Emily to get back to normal, be able to do the fun things

be a typical 18-year-old instead of laid down all the time. Yeah, good to see her having fun again

I do hope that me talking about the illness and my struggles helps other people

talk about those and also just understand more and know they're not alone

I'm now four days post-surgery and I thought I'd give a little bit of an update. I woke up after the surgery and I had immediate relief. I didn't have any pain in my head

Previously, I couldn't sneeze or cough without being in absolute agony. I have sneezed and coughed

since the surgery and with little to no pain in my head, which is absolutely crazy

Do you want to look at some of these old albums I found? Yeah

Look how little you are there. I look about the same, just chubbier

When you were born, you were six pounds and five ounces. You were tinier, but it's not super, you know, super, super tinier

But you were smaller than your brothers. When I was pregnant with Kaylee, she was my fourth child

I had three other boys, and it felt just like the pregnancy with them

I noticed no difference at all. Progeria is a rapid aging disease

It causes you to lose your hair and makes you smaller, age faster

When Kaylee was diagnosed, I'd never heard of progeria, so I was scared

When she was born, they didn't know anything was wrong. It wasn until she was about six months We went to the doctor and she was 9 pounds 6 ounces They really kind of started freaking out a little bit Finally right after she was a year that when they finally diagnosed her with progeria

after we'd already seen specialists for about six months, different ones. On fifth grade was when I stopped growing

I am 3'8", and I'm 35 pounds. I was 3'9". Was I 3'9"

You were about 3'9", until you had your hip surgery. Yeah, then they cut me down an inch. I thought they should have gave me an inch

I had my hip surgeries because my hips were dislocating. I can just about walk as far as like a mile or so

I have to use a wheelchair if I'm like with a group of people and we're walking a far distance

Obviously, it's hard for me to keep up. Here are the photos from your clinical trial

I think they're getting ready for a blood draw. The experimental drug that I was on, it helped a lot of progeric aids

It slows down the aging. It helps me live longer and all that

I mean, it does have a lot of side effects with, like, stomach problems and all that stuff, but it's still worth it

I really don't like being pitied just because I've had this condition my whole life

It's nothing new to me. When I first started posting on social media, it was definitely elementary school

Every time someone with progeria passes, I'll get the amount of comments of rest in peace goes way up

My comments are arguing about whether I'm alive or not. Some of them even argue with me. I'll comment back and be like, no, I'm still alive

And they're like, no, you're not. I'm like, what? I'm still here

My progeria does not define me. I just try to post positivity and show people my personality and that even with progeria doesn't make us any different

Some of the nice feedback I get on my social media is just people calling me an inspiration

Some people say that I'm pretty. I'm meeting my friend Faith and also my friend Kaylee

I've known these friends since I was in kindergarten. So we're very close and we hang out every weekend

Who do I look up to the most? I guess everybody. I'm only 3'8", so everybody's above me

I look up to them all. I do have my license, so I am looking forward

to when I finally get my van modified to my height so that I can be more independent

Hey! How are you? Good. Oh, that looks good. Thank you

Those look so good. Didn't we meet in hip-hop? Yes, it was hip-hop

Cheer dance. We did have cheer dance together. And we killed it

How old were we then? It had to be like first grade kindergarten. Yeah

I believe like Just right when I met you, like, we definitely, like, clicked right away

And I felt like we were going to be friends, like, forever. And clearly, we are

There's just, like, so many crazy memories. I don't even know where to start. Really long time ago, we had, like, big sleepovers with, like, everyone on the team

Oh, you would always be the judge in our, like, ugly dance-offs or whatever

And then you would have the, like, big microphone or whatever. And you would always be, like, next up to the stage

That's for fun. Whenever I'm in a room with you, I'm just always laughing

and many memories of just laughing. I just really appreciate how passionate you are

about whatever you do. I don't dance anymore because of my hips

but I've been painting for about three years or so. I like to just see what I can paint

like kind of challenge myself to do something harder and harder. every time I paint

She wants people to like her for who she is. I was talking to one of their teachers

and she said to me, I forgot Kaylee even has progeria. Like, once you get to know her, you forget

because her personality is so big. My biggest goal is for the future

I guess is to just be independent. Be able to drive myself places, having a good job

maybe possibly living on my own, but my mom thinks I should live in the backyard

like a tiny house, I don't think that. But I want more pets, so that's why I want to move out

so I can have more pets. And I want to study human resources

My attitude on life is just to be positive. Harry needs an infusion once a week

because he's got a compromised immune system. And since he's been having it

He's only maybe been hospitalised twice. It's literally a lifesaver. OK. Yes, do it

Are you ready? Yes, do it. One, two, three. First one. You do it quite slowly

Do you want me to do it faster? A bit faster. A bit faster. OK. One, two, three

There we go. That was better. Was that better? Oh, OK. Good. Hey, everybody

It's me, Harry. What else do I say? How old are you? 19

Yeah. I might be 20 soon. Yeah, you might be 20 soon. And what's interesting about you, do you think

I'm small. You are quite small, aren't you? Do you know how tall you are

3 foot 10. 3 foot 10, yeah. Are you ready? Yes. 1, 2, 3

Harry's got a condition called NBAS, so that stands for neuroblastoma amplified sequence

It affects many, many aspects of his body, pretty much all of them. He's registered blind, he's a type 1 diabetic, he's autistic

He's got brittle bones as well. How long do you have to sit there for your infusion, Harry

You tell him, I don't know. Yeah, so it takes about an hour to go through, doesn't it

It's only an hour. Yeah, it's not too long. There we go, do you want your headphones

Yes, please. Yes, please. Dokey-doke. I think at about three months old, he'd just got a normal check-up

and the doctor said, it doesn't look right to me. It took about, I think about ten years for him to get a proper diagnosis

How rare is the condition you have? Very rare. It is. It's almost impossible, in fact. Yeah, not many, is there

They started researching to MBAS, but then funding ran out. There's us and another family as well

that are currently trying to raise funds to keep the research going

because it's so rare that we know of there's 20 cases worldwide

Shall we unplug you? I'll hug you. Are you ready? One, two, three

Right, you can go and get dressed. It's pretty much 24-hour care with Harry

It's like every part of his disability has some sort of impact on his day-to-day

There's one arm. Two arms. OK. OK. But at the same time, he's also very easy to look after because of his autism

because everything is so structured with him with him are you ready for some lunch yes yes what do you fancy A ham sandwich It quite easy doing like his food because he so specific has to be a certain type of butter

and a certain type of bread but that's it, ham sandwich and half a pipe of milk. Can you manage

Yes. Yeah, there you go. Is that all right? Sure. People have said they can't tell whether he's

five or he could be 55. He's quite a gentleman. He's quite old-fashioned

His little phrase is, it's important to be accurate. What are we doing later, Harry

I don't know. No? If the weather stays nice, do you want to go and feed the ducks

No, I'm not going on that walk. Go in the car, then. If we drive down there, it'll be so much

better. Yeah, we can drive. It's fine. It's not a problem. I'm never walking down

there ever again. Oh, okay. And when I say ever, I mean never. Okay

He doesn't really socialise with adults his own age. You know, my friend's daughter is a good friend of his, but she's seven

Because of his learning disability and his learning delay, they get on great

Do you like being different from other people, Harry? Yes. But the thing is, if I was in the city by myself

I bet some ruffians and thugs would find it easier to pick on me

Ruffians and thugs might find it easier to pick on you. Yes. But... Yes

You wouldn't really be on your own, would you? No. No, you've always got me with you, haven't you

I mean, if I was on my own. If you were on your own, yeah. When he was younger, it was particularly teenage kids

that could be quite cruel. So, you know, getting on buses at school pick-up times and stuff

were really difficult. Whereas now, because of his TikTok... Hey, everybody, it's me, Harry

It's now, are they looking at him because he's different or are they looking at him because they recognise him

Three, two, one, go. Hey, everybody, it's me, Harry. Hello, how are you

I'm fine. OK, so what did we want to talk about today? Commodore dragons

Yes. Commodore dragons are cannibals. They're not. Yes, they are. Oh, that's gross

What do you expect? It's nature. True. And there's nothing you can do about it

I know. I had a massive pause for thought about TikTok. I was like, nope, absolutely not

people will be awful. And then when he got to 18, as much as I'd like to shield him

and protect him from things, he's still an adult who's got to

find his own way in life and this was something he really wanted to do

What do you like about going on TikTok? Fun. What is it that you like saying there

What do you like to talk about? Dinosaurs. Yeah. Tell me about when you thought

I went on TikTok for the first time. About everybody. Yeah, I was worried, wasn't I, about people

Yes. I was worried that people might be mean. But was I wrong

Actually, yes. Tell me how wrong you were. I was so wrong. Couldn't have been more wrong

You get lots of messages from all over the world, don't you? I wouldn't say I'm famous

No. What do you think makes someone famous? I don't know. Would you like to be famous

No, no. I'm not doing this for fame and glory. No. What are we doing it for? Fun

Just for fun. It's lovely that other people can see what we get to see every day

And they get to see the stroppy side of him as well, you know, because he calls a spade a spade. He could be a bit brutal at times

Let's have a look. Make sure we've got everything. Diabetes kit and food for the ducks

Try to get your cane. OK? Right, are we ready? Yes

Yeah, right, let's go then. Why do we have to do things perfectly? Because it's good to be accurate

Hey, you can't accurate me. I'm the one who's accurate. What's so funny

You. Harry starts farming college in September, and we are very excited about it

Looking around placements for him for once he left school was just like, what are the choices for people with disabilities

and then somebody mentioned a farming college and it was just perfect

It looks like they remembered me. I think they have remembered you. Oh, look, they're all coming over now

Oh, they know. What are you looking forward to about college? Which bits do you think you're most excited about

The animals. The animals. My hopes for him are just for him to enjoy his life

You know, there's no expectation of him. He can do whatever he wants

It is a life-limited condition. We don't know to what extent. So it's very important to us that he just has a great time

I'm unique. You are unique. I'm different. Yeah. Does it make you feel special being different

Yes. You don't have to be put in a box. You don't have to conform, do you

You can be and do anything you want, no matter what, you know

what your differences might be. Cos you can do anything you want, can't you

Yes. Yeah, you can be anything you want. Yes. Yeah. I'm Sharla

I have uncrimable hair syndrome, which is a genetic condition that I can't control

which makes my hair easily breakable and uncontrollably fuzzy. It makes my hair a lot different than normal people's hair

and quite hard to brush. Shaila was diagnosed with Uncomable Hair Syndrome at about five years of age when she went in

for a routine dental procedure and the anaesthetist at the time happened to do a bit of research

in the genetics behind Uncomable Hair Syndrome but also some of the other implications that

the condition comes with like brittle bones and teeth and fingernails so just other things

that we needed to be aware of throughout her life. Well this one is when you graduate a kindergarten and that wasn't too far from when we just

found out about your hair. We noticed Shilas hair wasn't from birth because her hair was perfectly normal when she was

born, but around three months of age when her baby hair kind of fell out and worn out

that's when this fuzzy kind of soft, fluffy type of hair was growing through and that was

probably our first indication that something was different. Oh, that's one of your very first baby pictures at home when you came home from the hospital

with Taylan. Wow. When we actually trusted him enough to leave you with him

Managing Shilas hair has been an absolute challenge. We've gone through phases where it will just completely break off

gone through phases where there was no growth occurring whatsoever. So the length we've

kind of got at the moment with Shaila's hair is probably the longest it's been, but it

hasn't gone past. So over the years we have tried a lot of different techniques with Shaila

Accessory items on her hair that are an absolute no-go because it burns very quickly like baby

hair. I have experienced bullying definitely in primary school. It happened much more often

What they used to call you. Fairy floss, F-O-M-F-O, mainly names like that

Some of the assumptions that we've heard is that jokes around her sticking her finger into a power socket

and making a bit of a joke about the appearance of it. A lot of people believe that we've got some genetic throwback, that she's got black ancestry or something along those lines

So again, it's just sometimes people's ignorance, rather than just accepting her for who she is and what she looks like, it's always a good thing

Question of why, why, why? A lot of the comments were based around the lack of maintenance

or the way that it looked and presented and it was uncombed and unbrushed, which wasn't actually true

It was just the best at the time that we were able to do with her hair without causing any further damage

When I was little, people always used to come to touch my hair, but now I'm older, I have set boundaries so people don't do it anymore

Some of the implications for this condition for Shaila is just really looking after the management of her hair

making sure that we take extra care as opposed to using heat or hot items or different types of products

I have definitely learned to love my hair and come to terms with it

because it makes me unique and different than other people. I'm most proud of that on my journey I can influence people to accept themselves for who they are and to be unique

My favourite thing about Shia, she's a very creative person. I believe my sister is a role model because of how she posts on Instagram

to raise awareness for people with her condition. We actually set up Shia's Instagram

because we wanted to connect with other people and we wanted to get some more insight into her condition itself

and tips and tricks from a wider community. My hope for the future, I hope to continue to encourage people

believe in themselves and accept who they are. I'm going to say I've had around 25 different fractures and breaks over the course of my life

I broke my ribs getting out of bed. I broke my nose falling down the stairs

Talking about teeth, that one just completely chipped off at the back because I had decided

to try Cinnabon for the first time. I don't know how, it was very soft

I have a rare form of brittle bone disease called hypophosphatasia, HPP for short

HPP is a inherited genetic disorder that causes your body to not be able to produce

enough alkaline phosphates, which is necessary in obviously the production of bones

I was only diagnosed at 17 years old, but I know I broke countless bones before that

The first time my family and I realized that I had broken a bone

I was around five years old. My mom was the only one who was home. She heard me blood-curdling scream

and rushed to find me clutching my arm. I broke my elbow in more ways than one

I managed to break the olecranon, which apparently kids aren't supposed to break

They did not fix it correctly back then, so we're still dealing with the fix of that now

Probably been close to a month now since surgery. When you break your olecranon and break the growth plate

and everything going on in that elbow and they don't fix it properly, things don't go well

In my case, the doctor told me that there was a ligament that was directly pressing on the ulnar nerve

pretty much at all times. And it caused severe sensory loss in the arm

And because of that, we did have to pop that baby open

and decompress it. Have this little guy. My family they don really bring it up or treat me differently We talk about it and we laugh about it They know I like to joke about the various ways I broken things

They try not to give me something to be sad about, you know

I've got the little bowed knees here. Yeah. When she was first learning to walk, she was actually bow-legged

as well as she would not walk on her own feet. she would walk tiptoed and on all fours which is actually a pretty much almost a

100% indicator of this disease because they don't have the strength in their

own bones to hold them up and no that's not a develop differently kind of issue

that is an actual disease issue. My mom has been supportive and has been by my

side pretty much my entire life and has been accompanying me to all of my

various doctors appointments, especially the ones before I was like 18 and wasn't

really in a place where I could advocate for myself. Even when she had her serious

break, still nobody picked up on that there was something wrong. There are so

few doctors that even recognize what this is. You really have to fight. I don't

think I would have gotten this diagnosis or really any of the diagnoses I've had

if she wasn't there with me. It was bittersweet because it was like obviously great knowing the answer

but it was kind of depressing because it was like that's the sentence

that you have to live with for the rest of your life and there's nothing you can do about it

Even after the diagnosis, we never told her not to do anything

because I don't want her to feel like she's limited. Has it affected your confidence

To an extent, but it's not necessarily the HPP itself that affects my confidence

It's more so how people react to me having HPP that affects my confidence and how they treat me differently for having it

They act like I'm made of glass and if they like touch me, oh my gosh, I'm going to shatter into a million pieces

I've kind of discovered that living my life in fear and with caution the entire time

that's not gonna help me really at all. I believe the first video I ever did make was just about like one of my breaks and a

conversation between me and my doctor and that video did really well

How did this happen? I got out of bed. What? I got out of bed, okay

So I started making some educational videos. I have a rare form of brittle bone disease known as hypophosphatasia

Most people do respond pretty positively and naturally some people ask about brittle bone

disease and want to know more information. And so I do like to respond to those comments because I mean I have no problem with those comments

But then there's a lot of people who have various misconceptions or are just uninformed

and are rude about that. One of which is, just drink some milk

Have you tried cheese? Fake. You don't have blue eyes. I had to go in and explain I don know which brittle bone disease you referring to So yeah that was fun It doesn really necessarily bother me anymore but I don

appreciate the misinformation being spread because that's harmful to anyone with HPP hearing it

People who have HPP, they all walk on their toes and people have been making fun of me for doing

that my entire life so I've decided screw the haters I'll just wear heels so they can't yell at

at me. Yo, Ma, are you ready to go? So today I'm going to be going to physical therapy

to continue working on my arm. I've only really had, I'm going to say maybe like four sessions

So let's just start with the older girl legs. We're definitely just trying to work on making sure

that the area that was decompressed has feeling again, making sure I can move the fingers properly

like everyone else can. So these are nerve glides. They're just gliding the nerve through where she had surgery

so that that nerve is not going to get caught on scar tissue or any of the swelling that's going on after the surgery

I broke my elbow 15 years ago, and they didn't fix it properly

and somehow, someway, this apparently happened. Is that surprising to you? Not necessarily

I mean, they probably just didn't put it in the correct position, which would have put more pressure on that nerve over time

More sore, achy, sensitive. Yeah. It's definitely, like, sore. So it's working the muscles, I guess

And obviously, I'd like to get things working again. We're on week three at this point

so probably about three more weeks. Have a good weekend. We'll see you next week

Thank you. Every disability is different. And so everybody can take something different

from this story. I think they should try to live as normal of a life as they can in spite of their disability

Despite having this, she is just as capable. Nothing's going to stop her as long as she keeps going forward

I know she can do it because she's strong. A little ironic

I refuse to let this one part of me in my life define everything about me

I'm more than just that. And everyone else is too. My name is Olivia Kloptchen

I'm 17 years old and I was born with a condition that causes my arm to swell

I have a vascular malformation and more technically mine is a venous malformation

so my arm gets blood clots because my veins aren't regular veins

They're very wide and they constantly expand. I like to think of it as a hose

If the hose is too big, the water's not going to be able to get through it with a regular spout

So it's going to kind of slow down and my arm clots up

I was first diagnosed when I was only a couple months old I was still a baby And the doctors originally thought it was just a bruise

When Olivia was first diagnosed, it was very frightening. We had this little tiny child and had no idea really what was wrong with her

Some of the worst things people have said, it's mostly been online

I think I was 12, and somebody messaged me who I went to school with

Out of pure anger, they just called me the Hulk. It was the Hulkie, you look like Hulkie

And I, back then, was very hurt by it because I'd never been called anything like that

I'd never compared myself to anything like that. I think that I'm just a beautiful person and that nothing is ever going to be able to affect that

What I see in the mirror now, I love myself. So I started posting on social media because I personally had never seen anybody with it before

I wanted to bring awareness. It's important for me because I felt lost when I was younger

because the only people I'd ever seen with anything similar to me were in a hospital

And so putting myself out there and meeting all these people meant I wasn't alone anymore

She has blossomed into an amazing young woman. Very, very proud of her

She always stood up for herself. It's her normal, even though it's not everybody else's normal

So today, I'm going to be challenging myself to go to a lake in Vermont in the wintertime

and take pictures with no coat on. I'm really excited about the photo shoot

I mean, it's cold. I don't necessarily enjoy the cold, but I like to challenge myself to try new things

I want to achieve the message of spreading body positivity by taking these photos

showing that you can be brave no matter what you're doing, even if it's out in the cold and below zero weather

It's cold! Okay, let's go! So that was a really awesome experience

I've never done anything like that. It was super exciting. I would definitely recommend trying something more out of your comfort zone

The message I would like to put out to the world from my story is that everybody is beautiful

and all of our differences define who we are as a person and we should stop hiding them

What I wish for in my future is to see others like myself putting themselves out there into

the world and not being afraid of who they are