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00:00The bullying will never stop. People, they're just mean. The world's mean. So
00:04just got to toughen up and get through it. I'm Alyssa, the teen who constantly
00:08smells like fish. My rare condition caused my brain to fall out the back of
00:12my skull. It takes me hours to get out of bed every day because of the pain. Other
00:17days I can't get out at all. Progeria is a rapid aging disease. I'm 18 years old. I
00:23am 3'8 and I'm 35 pounds. How old are you? 18. People have said they can't tell
00:30whether he's five or he could be 55. He's quite a gentleman. He's quite old
00:34fashioned. I was born with Uncarnable Hair Syndrome. Other implications that the
00:39condition comes with like brutal bones and teeth and fingernails. My rare condition
00:43causes my bones and teeth to break with ease. A lot of people have accused me of
00:48faking my disease. I was born with a condition that causes
00:53my arm to swell. Some of the worst things people have said, they called me the
00:57hole. I'm just a beautiful person. Nothing is ever going to be able to
01:03affect that. The name of my medical condition is trimethylaminaria. It makes
01:08me smell like fish. My mom knew when I was little that something was wrong, but they
01:14never found a name for it until I was about six because it's so rare.
01:22She was always sweating really bad. I couldn't put clothes on her overnight
01:26because she would just sweat through them. Her doctor looked into it and called
01:31me one day and was like, hey I think we might have something here and he sent her
01:38to do some testing and it came back that she had the trimethylaminaria. So,
01:45trimethylaminaria prevents certain proteins from being broken down in your
01:49digestive system and when your body can't break them down they sit basically
01:54sit in your gut and rot causing an odor. I started kindergarten and started being
02:01bullied for it. She was made fun of a lot, teased by a lot of the kids. Let's be
02:08honest, kids are pretty brutal. Calling her fish girl and all sorts of really mean
02:14names. There's always somebody, even in high school, there's always somebody who
02:21notices it. But they never really say it to my face. The bullying will never stop
02:27because people, they point out every little flaw about you. You know, people,
02:31they're just mean. The world's mean. So, just gotta toughen up and get through it.
02:39There's no treatment really. I just can't eat certain foods and I have to like take
02:46really good care of like my body. Like wear perfume, deodorant all the time. Take
02:52showers every night. The smell comes out all the time, especially like when I'm
02:56sweating, so. All we can do is making sure she's not eating a lot of green leafy
03:04vegetables. We have completely cut fish out of our diet. There's no milk. It's all
03:09almond milk. She can have tree nuts, just not like peanuts.
03:14Just let it with me. That'd be cool. You just don't get cheese.
03:19What? Cheese is the best part. It's really hard to find things I can eat, especially when
03:24going to like a restaurant. Usually we end up at like a seafood restaurant, which sucks.
03:31Um, but usually I eat like chicken tenders. That's about it.
03:37So what are you gonna do later? Um, I think Jordan's gonna come over and we're gonna play softball.
03:43It took a very long time to find my confidence.
03:47Hey, Amy, do you want to come play softball with me? I suppose.
03:52Here, hold my key. It really started when I started playing softball. I was on a team.
03:55They didn't really care about the smell or anything. They wanted to help me be the better softball
04:01player. And that was definitely the turning point. That's where I really fell in love with
04:05the sport and really like started to buckle down and wanted to play and knew that that's
04:12what I wanted to do. I work my butt off on the softball field. I work my butt off in
04:19my
04:19pitching and I do my very best in school that I can.
04:26That got my palm. My whole palm. She's got a lot of talent and she's really starting to love
04:33the game and getting good at it. She's got a lot of drive. She wants to be better than
04:38everybody else, but she also wants to be better than her own self.
04:44I think it offers her a release to get her anger and her aggression out when she's frustrated.
04:52I don't think I could deal with the bullying and all the craziness that she does every day
04:57and still be able to hold my head up.
05:01Situations like going to softball tryouts or, you know, being on a team, job interviews,
05:08those situations really make me nervous because, you know, you never know how people are going
05:12to react to it. But, you know, I know just to get through it.
05:32I like about the best about Alyssa is that she can be mean but nice at the same time.
05:43I think of her as a confident person.
05:51Nobody heard that right.
05:53My advice for kids that are being bullied for anything would just be let it go.
05:59Just toughen up and get through it. I have to live with it. It's never going to go away.
06:04I just know that I have to surround myself with people who don't notice it.
06:09My hope for myself for the future is to, you know, go to college.
06:12I want to play for Alabama. I want to, you know, get a really good job.
06:16And I want to, you know, advocate for myself for the rest of my life.
06:25Morning. You okay?
06:27Yeah. Thank you.
06:31How are you feeling?
06:33Sore, but I'm all right.
06:34Chiara malformation is a brain condition. My cerebellum, which is the back part of my brain,
06:40is slowly slipping down into my spinal canal through the opening in the base of the skull.
06:48Okay. I eat my breakfast lying down because I'm in so much pain in the mornings that I can't sit
06:53up.
06:54I slowly have to bring myself up on the bed, so I have to eat like this, but it can
06:58get quite uncomfortable.
07:00A really bad day, I will not get up whatsoever. I'll be laid down the entire day.
07:07It mainly hurts at the back of my head, but my entire body usually hurts.
07:12Every day you walk through the door and it's just...
07:19It's just emotional.
07:21Sorry.
07:24You walk through with anticipation that it's going to be a good day.
07:28Talk to her two minutes and you know it's not going to be like that.
07:32It's not going to be a day like that.
07:34The headaches started when I was seven. I didn't think anything of them as they were barely anything.
07:40I was skiing when I was 14 and I felt really poorly that skiing holiday.
07:45Yeah, you did, didn't you?
07:46We didn't really notice much signs, did we, when you was young?
07:50When I was 14, the pain became consistent. I just felt more and more pain in the back of my
07:55head, my neck, my shoulders, down my spine.
07:58I was getting weird tingling sensations in my arms and legs.
08:01She went from being a kid that does everything, skis, runs, love dancing, to lying in bed 90% of
08:09the day.
08:10It was quite shocking.
08:11We took her to A&E three times and on the third time, Emily was just in so much pain.
08:17They didn't know what to do to help her.
08:19I was finally diagnosed in October 2021 when I was 15 after an MRI scan, which me and my dad
08:26had to fight for.
08:28They kept saying to me, come back when it's worse.
08:30And my dad just said, it can't get any worse. She's bed bound. She can't do anything.
08:36He wouldn't leave until they looked into it more.
08:39It was a big relief when we got diagnosed because we knew, didn't we?
08:43We had something, the reason why she was getting all these headaches and we had all these question marks before.
08:50At first, I didn't understand the scans very well.
08:53When I did start to understand, I noticed how severe the Chiari was.
08:56I did realise that my brain was herniating quite a lot.
09:00This was my first ever MRI and my brain went all the way down.
09:06You can see the white bit around my brain, it's grey. There's barely any of it.
09:11But then on this, after the decompression, how much more of that there is.
09:17The comparison is amazing, isn't it?
09:19I had decompression brain and spinal surgery three months after being diagnosed.
09:24They remove a bit of my skull, a bit of my spine, remove a bit of my herniating brain
09:29and replace the brain lining with a skin graft from inside my head to expand it.
09:35It allowed fluid to flow around my brain, relieving the pain in my head, my neck pain, my back pain.
09:41However, a lot of that has come back since.
09:44My more recent one here, it's all slipped back down and there's barely any fluid around my brain again.
09:50This is my brain stem. I believe that goes down into the film.
09:53And that's the bit they're going to cut.
09:56They're going to cut, yeah.
09:57I'm hoping to have the film terminal sectioning surgery in three or four weeks' time.
10:02I have to go to Barcelona for this surgery as it's not done in England and not performed under the
10:08NHS.
10:09I am having to pay a lot out of my savings, which is quite upsetting as those could be used
10:15for my future.
10:16But I'm happy to spend them on this as hopefully this will give me my future.
10:20I play a lot of netball a week. I would do training two times a week, sometimes three.
10:26When I was 17, roughly a year after my surgery, I just couldn't handle the symptoms that were coming back
10:33anymore.
10:33So I have to stop.
10:34I'm hopeful about the surgery. Hopefully it will give me a new chance at life.
10:39I'm more nervous for the fact if it doesn't work and if it doesn't help me, as it seems to
10:45be my last chance to actually help the condition.
10:48Hiya, how are you?
10:50I'm good. How are you doing, Emily? How are you feeling? Are you getting any worse or how are your
10:55symptoms?
10:56I'm struggling at the moment. It has been a lot worse the past few weeks.
10:59I first met Margot on a Facebook group where people talk about their Chiari and people who have had this
11:08film surgery or are hoping to get the film surgery talk on there.
11:12And she is a big advocate for the film surgery.
11:14So they go in and they make a one inch incision at the base of your spine and they clip
11:20the ligament and it releases the tension on the spine.
11:23Many people get their neurological symptoms, you know, reduced.
11:27And my daughter Caroline, hers was like a tight rubber band.
11:31We had to get her handicap passed because she could barely walk.
11:33And four days after surgery, she was walking up a flight of stairs, not even holding on to the handrail.
11:38My other daughter headaches were gone.
11:40She also had swallowing issues where she felt like she had something stuck in her throat.
11:46That sensation was completely gone.
11:48Very miraculous for my kids.
11:50That is incredible. Gives me a lot of hope here in that.
11:53Think of a positive outcome. Think of my kids.
11:55And hopefully that will be the case for you as well.
11:58Yeah.
11:59And you're definitely in good hands.
12:01Thank you so much for talking to me about this.
12:04I wish you the best of luck. Please keep me posted.
12:06Will do. Thank you.
12:07Okay.
12:08Bye.
12:08Bye bye.
12:10Hello.
12:11How are you?
12:12I'm good.
12:15When Em's having a bad day and I'm coming over, normally she'll be up here. I'll just walk in her
12:21house. I'll come upstairs and I'll just sit here with her. It's just really nice to know that we can
12:26do that.
12:26Over time I have unfortunately lost quite a few friends. People have accused me of faking the condition. A lot
12:33of my friends unfortunately didn't believe me. I know that my condition is real. I know that I struggle with
12:39it. And I don't blame those who do think that as they don't experience it so they don't know. But
12:44I just hope through me spreading the awareness that more people understand and not as naive about chronic illness.
12:51I decided to make a TikTok account about my condition and try and spread awareness. I've had many good reactions,
12:59positive reactions, and a lot of people come back to me telling me that I've helped them, which is crazy.
13:04That's an amazing feeling. That's what I want.
13:06Bringing the Chiari situation to the forefront of as many people's lives as she can is going great. So I'm
13:13super proud in that sense. Super proud.
13:14I just want Emily to get back to normal. Be able to do the fun things. Be a typical 18
13:20year old instead of lay down all the time. Yeah. Good to see her having fun again.
13:26I do hope that me talking about the illness and my struggles helps other people talk about those and also
13:34just understand more and know they're not alone.
13:41I'm now four days post-surgery and I thought I'd give a little bit of an update. I woke up
13:46after the surgery and I had immediate relief. I didn't have any pain in my head. Previously, I couldn't sneeze
13:51or cough without being in absolute agony. I have sneezed and coughed since the surgery and with little to no
13:58pain in my head, which is absolutely crazy.
14:04Do you want to look at some of these old albums I found? Yeah. Look how little you are there.
14:10I look about the same, just chubbier. When you were born, you were six pounds and five ounces. You were
14:18tinier, but it's not, it's not super, you know, super, super tinier, but you were smaller than your brothers.
14:25When I was pregnant with Kaylee, she was my fourth child. I had three other boys and I had, it
14:31felt just like the pregnancy with them. I noticed no difference at all.
14:36Progeria is a rapid aging disease, causes you to lose your hair and makes you smaller, age faster.
14:44When Kaylee was diagnosed, I'd never heard of progeria. So I was, um, I was scared. When she was born,
14:51they didn't know anything was wrong.
14:53It wasn't until she was about six months. We went to the doctor and she was nine pounds, six ounces.
14:59They really kind of started freaking out a little bit.
15:01Finally, right after she was a year, that's when they finally diagnosed her with progeria after we'd already seen specialists
15:09for about six months, different ones.
15:10On fifth grade was when I stopped growing. I am 3'8 and I'm 35 pounds. I was 3'9.
15:21Was I 3'9?
15:21You were about 3'9 until you had your hip surgeries.
15:23Yeah, then they cut me down an inch. I thought they should have gave me an inch.
15:30I had my hip surgeries because my hips were dislocating. I can just about walk as far as like a
15:37mile or so.
15:38I have to use a wheelchair if I'm, like, with a group of people and we're walking a far distance.
15:46Obviously, it's hard for me to keep up.
15:49Here are the photos from your clinical trial.
15:51I think they're getting ready for a blood draw. The experimental drug that I was on, it helped a lot
15:58of progeria kids. It slows down the aging.
16:01It helps me live longer and all that. I mean, it does have a lot of side effects with, like,
16:08stomach problems and all that stuff, but it's still worth it.
16:12I really don't like being pitied just because I've had this condition my whole life. It's nothing new to me.
16:20When I first started posting on social media, it was definitely elementary school.
16:25Every time someone, like, with progeria passes, I'll get, like, the amount of comments of rest in peace goes way
16:32up.
16:33My comments are, like, arguing about whether I'm alive or not. Some of them even argue with me. I'll comment
16:38back and be like, no, I'm still alive.
16:40And they're like, no, you're not. I'm like, what? I'm still here. My progeria does not define me.
16:46I just try to post positivity and show people my personality and that even with progeria doesn't make us any
16:56different.
16:57Some of the nice feedback I get on my social media is just people calling me an inspiration.
17:04And some people say that I'm pretty.
17:08I'm meeting my friend Faith and also my friend Kaylee.
17:13I've known these friends since I was in kindergarten, so we're very close and we hang out every weekend.
17:20Who do I look up to the most? I guess everybody. I'm only 3'8", so everybody's above me. I
17:26look up to them all.
17:29I do have my license, so I am looking forward to when I finally get my van modified to my
17:35height so that I can be more independent.
17:44Hey! How are you?
17:48Good.
17:49Oh, that looks good. Thank you.
17:51You're welcome. Those look so good.
17:53Those do look really good.
17:54Didn't we meet in hip-hop?
17:56Yes, it was hip-hop.
17:58Cheer dance. We did have cheer dance together.
18:01And we killed it.
18:01Yeah. How old were we then?
18:03It had to be like first grade kindergarten.
18:06Yeah. Um, yeah.
18:08Yeah.
18:09I believe, like, it's just right when I met you, like, we definitely, like, clicked right away.
18:15And I felt like we were gonna be friends, like, forever. And clearly, we are.
18:19There's just, like, so many crazy memories. I don't even know where to start.
18:22Really long time ago when we had, like, big sleepovers with, like, everyone on the team.
18:26Oh!
18:27We, you would always be the judge in our, like, ugly dance-offs or whatever.
18:33Uh-huh.
18:34And then you would have the, like, big microphone or whatever.
18:37And you would always be like, next up to the stage.
18:40Those were fun.
18:41Whenever I'm in a room with you, I'm just always laughing.
18:44And many memories of just laughing.
18:47I just really appreciate how, like, passionate you are about, like, whatever you do.
18:55I don't dance anymore because of my hips, but I've been painting for about three years or so.
19:01I like to just see what I can paint, like, kind of challenge myself to do something harder and harder
19:08every time I paint.
19:09She wants people to like her for who she is.
19:12I was talking to one of their teachers, and she said to me, I forgot Kaylee even has, you know,
19:19progeria.
19:19Like, once you get to know her, you forget because her personality is so big.
19:23My biggest goal is for the future, I guess, is to just be independent and be able to drive myself
19:31places, having a good job,
19:34maybe possibly living on my own, but my mom thinks I should live in the backyard with a tiny house.
19:40I don't think that.
19:41But, um, I go, I want more pets, so that's why I want to move out so I can have
19:46more pets.
19:47And I want to study human resources.
19:51My attitude on life is just to be positive.
19:56Harry needs an infusion once a week because he's got a compromised immune system.
20:02And since he's been having it, he's only maybe been hospitalised twice.
20:07It's literally a lifesaver.
20:09Okay?
20:11Yes, do it.
20:12Are you ready?
20:12Yes, do it.
20:13One, two, three.
20:14First one.
20:15You do it quite slowly.
20:17Do you want me to do it faster?
20:18A bit faster.
20:19A bit faster.
20:20Okay.
20:21One, two, three.
20:21There we go.
20:22That was better.
20:23Was that better?
20:24Oh, okay.
20:24Good.
20:26Hey everybody, it's me, Harry.
20:28What else do I say?
20:29How old are you?
20:30Nineteen.
20:31Yeah.
20:31I might be twenty soon.
20:32Yeah, you might be twenty soon, yeah.
20:34And what's interesting about you, do you think?
20:37I'm small.
20:38You are quite small, aren't you?
20:39Do you know how tall you are?
20:40Three foot ten.
20:41Three foot ten.
20:42Three foot ten.
20:42Yeah.
20:43Are you ready?
20:44Yes.
20:44One, two, three.
20:47Harry's got a condition called NBAS, so that stands for Neuroblastoma Amplified Sequence.
20:53It affects many, many aspects of his body, pretty much all of them.
20:56He's registered blind.
20:58He's a type one diabetic.
21:00He's autistic.
21:01He's got brittle bones as well.
21:04How long do you have to sit there for your infusion, Harry?
21:07You tell him I don't know.
21:08Yeah, so it takes about an hour to go through, doesn't it?
21:11It's only an hour.
21:12Yeah, it's not too long.
21:13There we go.
21:14Do you want your headphones?
21:15Yes, please.
21:15Yes, please.
21:16Okey-doke.
21:17I think about three months old, he'd just got a normal checkup.
21:22And the doctor said, it doesn't look right to me.
21:25It took about, I think about ten years for him to get a proper diagnosis.
21:30How rare is the condition you have?
21:32Very rare.
21:33Yeah, it is.
21:34It's almost impossible, in fact.
21:36Yeah, not many, is there?
21:38They started researching to NBAS, but then funding ran out.
21:43There's us and another family as well that are currently trying to raise funds
21:47to keep the research going, because it's so rare that we know of,
21:52there's 20 cases worldwide.
21:55Shall we unplug you?
21:57Are you ready?
21:58One, two, three.
22:00Right, you can go and get dressed.
22:01It's pretty much 24-hour care with Harry.
22:04It's like every part of his disability has some sort of impact on his day-to-day.
22:11There's one arm.
22:14Two arms.
22:15OK.
22:16OK.
22:17But at the same time, he's also very easy to look after, because of his autism,
22:23because everything is so structured with him.
22:26Are you ready for some lunch?
22:27Yes, lunchtime.
22:28Yes.
22:28What do you fancy?
22:30I have some lunchtime.
22:32It's quite easy doing, like, his food.
22:35Because he's so specific, it has to be a certain type of butter
22:38and a certain type of bread.
22:40But that's it.
22:41Ham sandwich and half a pipe of milk.
22:44Can you manage?
22:45Yes.
22:46Yeah.
22:46Well, there you go.
22:48Is that all right?
22:49Sure.
22:50People have said they can't tell whether he's five or he could be 55.
22:54He's quite a gentleman.
22:56He's quite old-fashioned.
22:58His little phrase is, it's important to be accurate.
23:01What are we doing later, Harry?
23:02I don't know.
23:03No?
23:04If the weather stays nice, do you want to go and feed the ducks?
23:07No, I'm not going on that walk.
23:09Go in the car, then.
23:11If we drive down there, it'll be so much better.
23:13Yeah, we can drive.
23:14It's fine.
23:15It's not a problem.
23:16I'm never walking down there ever again.
23:18Oh, OK.
23:19And when I say ever, I mean never.
23:22OK.
23:22He doesn't really socialise with adults his own age.
23:26You know, my friend's daughter is a good friend of his, but she's seven.
23:31Because of his learning disability and his learning delay, they get on great.
23:36Do you like being different from other people, Harry?
23:38Yes.
23:39But the thing is, if I was in the city by myself, I bet some ruffians and thugs would find
23:48it easier to pick on me.
23:49Yes.
23:49Ruffians and thugs might find it easier to pick on you.
23:52Yes.
23:53But...
23:54Yes.
23:55You wouldn't really be on your own, would you?
23:57No.
23:58No, you've always got me with you, haven't you?
24:00Unless if I was on my own.
24:01If you were on your own, yeah.
24:02When he was younger, it was particularly teenage kids that could be quite cruel.
24:09So, you know, getting on buses at school pick-up times and stuff were really difficult.
24:14Whereas now, because of his TikTok...
24:16Hey everybody, it's me, Harry.
24:18It's now, are they looking at him because he's different or are they looking at him because they recognise him?
24:25Three, two, one, go.
24:27Hey everybody, it's me, Harry.
24:29Hello!
24:29How are you?
24:30I'm fine.
24:31Okay, so what did we want to talk about today?
24:34Commodore dragons.
24:35Yes.
24:35Commodore dragons are cannibals.
24:39They're not.
24:40Yes, they are.
24:40Oh, that's gross.
24:41What do you expect?
24:42It's nature.
24:44True.
24:44And there's nothing you can do about it.
24:46I know.
24:47I had a massive pause for thought about TikTok.
24:49I was like, nope, absolutely not.
24:51People will be awful.
24:53And then when he got to 18, as much as I'd like to shield him and protect him from things,
24:59he's still an adult who's got to find his own way in life.
25:02And this was something he really wanted to do.
25:05What do you like about going on TikTok?
25:08Fun.
25:09What is it that you like saying there?
25:11What do you like to talk about?
25:12Dinosaurs.
25:13Yeah.
25:14Tell them about when you thought I went on TikTok for the first time.
25:17About everybody.
25:18Yeah, I was worried, wasn't I, about people.
25:21Yes.
25:22I was worried that people might be mean.
25:25But was I wrong?
25:26Actually, yes.
25:27Tell me how wrong you were.
25:28I was so wrong.
25:29Couldn't have been more wrong.
25:30You get lots of messages from all over the world, don't you?
25:34I wouldn't say I'm famous.
25:35No.
25:36What do you think makes someone famous?
25:38I don't know.
25:40Would you like to be famous?
25:42No, no.
25:43I'm not doing this for fame and glory.
25:46No.
25:46What are we doing it for?
25:47Fun.
25:48Just for fun.
25:49It's lovely that other people can see what we get to see every day.
25:53And they get to see the stroppy side of him as well.
25:56You know, because he calls a spade a spade.
25:58He can be a bit brutal at times.
26:01Let's have a look.
26:02Make sure we've got everything.
26:05Diabetes kit and food for the ducks.
26:08Do you want to get your cane?
26:10Okay.
26:10Sometimes it's very important for couples to do.
26:13That's what I'm making.
26:14Especially if they're flying.
26:16Okay.
26:17Right.
26:17Are we ready?
26:18Yes.
26:19Yep.
26:19Right.
26:19Let's go then.
26:20Why do we have to do things perfectly?
26:22Because it's good to be accurate.
26:25Hey, you can't accurate me.
26:27I'm the one who's accurate.
26:31What's so funny?
26:32You.
26:34Harry starts farming college in September.
26:38And we are very excited about it.
26:40Looking around placements for him for once he left school was just like,
26:44what are the choices for people with disabilities?
26:47And then somebody mentioned a farming college and it was just perfect.
26:53It looks like they remembered me.
26:55I think they have remembered you.
26:57Oh, look, they're all coming over now.
27:00Oh, they know.
27:02What are you looking forward to about college?
27:04Which bits do you think you're most excited about?
27:07The animals.
27:07The animals.
27:09My hopes for him are just for him to enjoy his life.
27:14You know, there's no expectation of him.
27:18He can do whatever he wants.
27:21It is a life-limited condition.
27:23We don't know to what extent.
27:25So it's very important to us that he just has a great time.
27:30Yeah.
27:31I'm unique.
27:32You are unique.
27:33I'm different.
27:34Yeah.
27:35Does it make you feel special being different?
27:38Yes.
27:38You don't have to be put in a box.
27:42You don't have to conform, do you?
27:44You can be and do anything you want, no matter what your differences might be.
27:50Because you can do anything you want, can't you?
27:53Yes.
27:53Yeah.
27:54You can be anything you want.
27:55Yes.
27:56Yeah.
27:59I'm Sharla.
28:00I have Uncomorable Hair Syndrome, which is a genetic condition that I can't control,
28:05which makes my hair easily breakable and uncontrollably fuzzy.
28:09It makes my hair a lot different than normal people's hair and quite hard to brush.
28:14Sharla was diagnosed with Uncomorable Hair Syndrome at about five years of age when she went in
28:19for a routine dental procedure.
28:21And the anaesthetist at the time happened to do a bit of research in the genetics behind
28:25Uncomorable Hair Syndrome.
28:27But also some of the other implications that the condition comes with like brittle bones
28:30and teeth and fingernails.
28:32So just other things that we needed to be aware of throughout her life.
28:37Well this one is when you graduate a kindergarten and that wasn't too far from when we just
28:41found out about your hair.
28:42We noticed Sharla's hair wasn't from birth because her hair was perfectly normal when
28:45she was born.
28:46But around three months of age when her baby hair kind of fell out and worn out, that's
28:49when this fuzzy kind of soft, fluffy type of hair was growing through and that was probably
28:55our first indication that something was different.
28:58That's one of your very first baby pictures at home when you came home from the hospital with
29:01Taylin.
29:02Wow.
29:02When we actually trusted him enough to believe you were with him.
29:07Managing Sharla's hair has been an absolute challenge.
29:09We've gone through phases where it would just completely break off.
29:12We've gone through phases where there was no growth occurring whatsoever.
29:15So the length we've kind of got at the moment with Sharla's hair is probably the longest
29:19it's been but it hasn't gone past.
29:21So over the years we have tried a lot of different techniques with Sharla.
29:24Accessory items on her hair that are hot are an absolute no-go because it burns very
29:27quickly like baby hair.
29:29I have experienced bullying definitely in primary school.
29:31It happened much more often.
29:33What do they used to call you?
29:35Fairy floss, pom pom afro, mainly names like that.
29:42Some of the assumptions that we've heard is jokes around her sticking her finger into a
29:46power socket and making a bit of a joke about the appearance of it.
29:49A lot of people believe that we've got some genetic throwback, that she's got black ancestry
29:53or something along those lines.
29:55So again it's just sometimes people's ignorance rather than just accepting her for who she
29:58is and what she looks like.
29:59It's always that question of why?
30:01Why?
30:02Why?
30:03A lot of the comments are based around the lack of maintenance or the way that it looked
30:06or presented and it was uncombed and unbrushed which wasn't actually true.
30:10It was just the best at the time that we were able to do with her hair without causing any
30:13further damage.
30:15When I was little people always used to come up and touch my hair but now I'm older I have
30:19set boundaries so people don't do it anymore.
30:22Some of the implications for this condition for Shaila is just really looking after the
30:25management of her hair, making sure that we take extra care as opposed to using heat
30:30or hot items or different types of products.
30:34I've definitely learned to love my hair and come to terms with it because it makes me unique
30:38and different than other people.
30:41I'm most proud that on my journey I can influence people to accept themselves for who they are
30:46and to be unique.
30:47My favourite thing about Shaila is she's a very creative person.
30:50I believe my sister is a role model because of how she posts on Instagram to raise awareness
30:55for people with her condition.
30:57We actually set up Shaila's Instagram because we wanted to connect with other people and we
31:01wanted to get some more insight into her condition itself and tips and tricks from a
31:06wider community.
31:07My hope for the future, I hope to continue to encourage people, believe in themselves
31:13and accept who they are.
31:20I'm going to say I've had around 25 different fractures and breaks over the course of my life.
31:26I broke my ribs getting out of bed.
31:31I broke my nose falling down the stairs talking about teeth.
31:36That one just completely chipped off at the back because I had decided to try Cinnabon for the first time.
31:43I don't know how.
31:44It was very soft.
31:46I have a rare form of brittle bone disease called hypophosphatasia, HPP for short.
31:51HPP is an inherited genetic disorder that causes your body to not be able to produce enough alkaline
31:58phosphates, which is necessary in obviously the production of bones.
32:03I was only diagnosed at 17 years old, but I know I broke countless bones before that.
32:09The first time my family and I realized that I had broken a bone, I was around five years old.
32:14My mom was the only one who was home.
32:16She heard me like blood-curdling scream and rushed to find me like clutching my arm.
32:23I broke my elbow in more ways than one.
32:27I managed to break the olecranon, which apparently kids aren't supposed to break.
32:33They did not fix it correctly back then, so we're still dealing with the effects of that now.
32:38Probably been close to a month now since surgery.
32:41When you break your olecranon and break the growth plate and everything going on in that elbow,
32:46and they don't fix it properly, things don't go well.
32:49In my case, the doctor told me that there was a ligament that was directly pressing on the ulnar nerve
32:54pretty much at all times, and it caused severe sensory loss in the arm.
32:59And because of that, we did have to pop that baby open and decompress it.
33:05I have this little guy.
33:06My family, they don't really bring it up or treat me differently.
33:12We talk about it and we laugh about it.
33:14They know I like to joke about the various ways I've broken things.
33:19They try not to give me something to be sad about, you know.
33:23I've got the little bowed knees here.
33:25Yeah.
33:26When she was first learning to walk, she was actually bow-legged as well as she would not
33:32walk on her own feet.
33:34She would walk tiptoed and on all fours, which is actually pretty much almost a 100% indicator
33:40of this disease because they don't have the strength in their own bones to hold them up.
33:45And no, that's not a developed differently kind of issue.
33:49That is an actual disease issue.
33:52My mom has been supportive and has been by my side pretty much my entire life and has
33:58been accompanying me to all of my various doctor's appointments, especially the ones before I was
34:03like 18 and wasn't really in a place where I could advocate for myself.
34:08Even when she had her serious break, still nobody picked up on that there was something wrong.
34:14There are so few doctors that even recognize what this is.
34:19You really have to fight.
34:20I don't think I would have gotten this diagnosis or really any of the diagnoses I've had if she
34:25wasn't there with me.
34:27It was bittersweet because it was obviously great knowing the answer, but it was kind of depressing because
34:37it was like that's the sentence that you have to live with for the rest of your life and there's
34:43nothing you can do about it.
34:44Even after the diagnosis, we never told her not to do anything because I don't want her to feel like
34:51she's limited.
34:52Is it affecting your confidence?
34:55To an extent, but it's not necessarily the HPP itself that affects my confidence.
35:02It's more so how people react to me having HPP.
35:07That affects my confidence and how they treat me differently for having it.
35:11They act like I'm made of glass and if they like touch me, oh my gosh, I'm going to shatter
35:17into a million pieces.
35:18I've kind of discovered that living my life in fear and with caution the entire time, that's not going to
35:26help me really at all.
35:28I believe the first video I ever did make was just about like one of my breaks and a conversation
35:36between me and my doctor and that video did really well.
35:40How did this happen? I got out of bed.
35:43What? I got out of bed, okay?
35:46So I started making some educational videos.
35:48I have a rare form of brittle bone disease known as hypophosphatasia.
35:51Most people do respond pretty positively and naturally some people ask about brittle bone disease and want to know more
35:58information.
36:00And so I do like to respond to those comments because I mean I have no problem with those comments.
36:04But then there's a lot of people who have various misconceptions or are just uninformed and are rude about that.
36:11One of which is just drink some milk.
36:14Have you tried cheese?
36:16Fake.
36:17You don't have blue eyes.
36:19And I had to go in and explain, I don't know which brittle bone disease you're referring to.
36:24So yeah, that was fun.
36:25It doesn't really necessarily bother me anymore, but I don't appreciate the misinformation being spread because that's harmful to anyone
36:34with HPP hearing it.
36:37People who have HPP, they all walk on their toes.
36:41And people have been making fun of me for doing that my entire life.
36:45So I've decided screw the haters.
36:47I'll just wear heels so they can't yell at me.
36:51Hey yo ma, are you ready to go?
36:55So today I'm going to be going to physical therapy to continue working on my arm.
37:02I've only really had, I'm going to say maybe like four sessions.
37:06So let's just start with the ulnar nerve legs.
37:09We're definitely just trying to work on making sure that the area that was decompressed has feeling again.
37:15Making sure I can move the fingers properly like everyone else can.
37:20So these are nerve glides, they're just gliding the nerve through where she had surgery.
37:24So that that nerve is not going to get caught on scar tissue or any of the swelling that's going
37:30on after the surgery.
37:31I broke my elbow 15 years ago and they didn't fix it properly.
37:36And somehow, someway this apparently happened.
37:39Is that surprising to you?
37:41Not necessarily.
37:42I mean, they probably just didn't put it in the correct position, which would have put more pressure on that
37:47nerve over time.
37:48More sore, achy, sensitive, yeah.
37:54It's definitely like sore, so it's working the muscles nice.
37:59And obviously I'd like to get things working again.
38:02We're on week three at this point, so probably about three more weeks.
38:06Have a good weekend, we'll see you next week.
38:12Every disability is different, and so everybody can take something different from this story.
38:17I think they should try to live as normal of a life as they can in spite of their disability.
38:25Despite having this, she is just as capable.
38:29Nothing's going to stop her as long as she keeps going forward.
38:32I know she can do it because she's strong.
38:35A little ironic.
38:40I refuse to let this one part of me in my life define everything about me.
38:47I'm more than just that.
38:49And everyone else is too.
38:54My name is Olivia Klopchen.
38:57I'm 17 years old, and I was born with a condition that causes my arm to swell.
39:01I have a vascular malformation, and more technically mine is a venous malformation.
39:08So my arm gets blood clots because my veins aren't regular veins.
39:15They're very wide, and they constantly expand.
39:19I like to think of it as a hose.
39:22If the hose is too big, the water's not going to be able to get through it with a regular
39:27spout.
39:28So it's going to kind of slow down, and my arm clots up.
39:32I was first diagnosed when I was only a couple months old.
39:36I was still a baby, and the doctors originally thought it was just a bruise.
39:46When Olivia was first diagnosed, it was very frightening.
39:51We had this little tiny child and had no idea really what was wrong with her.
39:58Some of the worst things people have said, it's mostly been online.
40:02I think I was 12, and somebody messaged me who I went to school with.
40:07Out of pure anger, they just called me the Hulk.
40:10It was the Hulky, you look like Hulky.
40:13And I, back then, was very hurt by it because I'd never been called anything like that.
40:18I'd never compared myself to anything like that.
40:21I think that I'm just a beautiful person and that nothing is ever going to be able to affect that.
40:29What I see in the mirror now, I love myself.
40:33So I started posting on social media because I personally had never seen anybody with it before.
40:40I wanted to bring awareness.
40:41It's important for me because I felt lost when I was younger
40:46because the only people I'd ever seen with anything similar to me were in a hospital.
40:51And so putting myself out there and meeting all these people meant I wasn't alone anymore.
40:58She has blossomed into an amazing young woman. Very, very proud of her.
41:03She always stood up for herself. It's her normal, even though it's not everybody else's normal.
41:10So today, I'm going to be challenging myself to go to a lake in Vermont in the wintertime and take
41:18pictures with no coat on.
41:23I'm really excited about the photo shoot.
41:25I mean, it's cold. I don't necessarily enjoy the cold, but I like to challenge myself to try new things.
41:33I want to achieve the message of spreading body positivity by taking these photos,
41:39showing that you can be brave no matter what you're doing,
41:42even if it's out in the cold and below zero weather.
41:45It's cold!
41:46Okay, let's go!
42:00So that was a really awesome experience. I've never done anything like that.
42:06It was super exciting.
42:08I would definitely recommend trying something more out of your comfort zone.
42:12The message I would like to put out to the world from my story is that everybody is beautiful,
42:18and all of our differences define who we are as a person, and we should stop hiding them.
42:23What I wish for in my future is to see others like myself putting themselves out there into the world
42:30and not being afraid of who they are.
42:43Where are these people who have kind of illusion,
42:46so during all these moments developed on beautiful and beautiful shoulders?
42:49How should they change?
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