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7 Teens Refusing To Let Their Conditions Define Them | BORN DIFFERENT — Transcript

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0:00Uh, the bullying will never stop.
0:02People, they're just [music] mean. The
0:03world's mean. So, you just got to
0:05toughen up and get through it.
0:07>> I'm Alyssa, the teen who constantly
0:08smells like fish.
0:10>> My rare condition caused my brain to
0:12fall out the back of my skull. It takes
0:13me hours to get out of bed every day
0:15because of the pain. Other days, I can't
0:17get out at all.
0:19>> Progeria is a rapid aging disease. I'm
0:2218 years old. I am 3 ft and I'm 35
0:26[music] lb.
0:27>> How old are you?
0:27>> 19.
0:28>> People have said they can't tell whether
0:31he's 5 or he could be 55. He's quite a
0:33gentleman. He's quite old-fashioned.
0:35>> I was born with uncombable hair
0:37syndrome.
0:37>> Are the implications [music] that the
0:39condition comes with like brittle bones
0:41and teeth and fingernails?
0:42>> My rare condition causes my bones and
0:44teeth to break with ease. A lot of
0:47people have accused me [music] of faking
0:49my disease.
0:51>> I was born with a condition that [music]
0:53causes my arm to swell.
0:54>> Some of the worst things people have
0:56said is they called me the Hulk.
0:59>> I'm just a beautiful person. Nothing is
1:01ever going to be able to affect that.
1:05>> The name of my medical condition is
1:07trimethylaminuria. It makes me smell
1:09like fish.
1:10My mom knew when I was little that
1:12something was wrong, but they never
1:14found a name for it [music]
1:16until I was about 6 because it's so
1:19rare.
1:22>> She was always sweating really bad. I
1:25couldn't put clothes on her overnight
1:27because she would just sweat through
1:28them. Her doctor looked into it and
1:31called me one day and was like, "Hey, I
1:33think we might have something here."
1:36And he sent her [music] to do some
1:38testing and it came back that she had
1:42the trimethylaminuria.
1:44So, trimethylaminuria prevents certain
1:46proteins from being broken down in your
1:49digestive system. And when your body
1:52can't break them down, they sit
1:54basically sit in your gut and rot,
1:56causing an odor.
1:58>> I started kindergarten and started
2:01being bullied for it.
2:04>> She was made fun of a lot, teased by a
2:06lot of the kids. Let's be honest, kids
2:09are pretty brutal. Calling her fish girl
2:12and
2:13all sorts of really mean names.
2:16>> There's always somebody, even in high
2:18school, there's always somebody who
2:20notices it.
2:23But they never really say it to my face.
2:25[music]
2:26The bullying will never stop because
2:27people they point out every little flaw
2:29about you. You know, people they're just
2:32mean, the world's mean.
2:33So, just got to toughen up and get
2:35through it.
2:39There's no treatment really. I just
2:42can't eat certain foods
2:43and
2:45I have to like take really good care of
2:47like my body. Like wear perfume,
2:50deodorant all the time, take showers
2:52every night. The smell comes out all the
2:54time, especially like when I'm sweating,
2:57so.
2:59>> All we can do is making sure she's not
3:02eating a lot of green leafy vegetables.
3:05We [music] have completely cut fish out
3:06of our diet. There's no milk, it's all
3:09almond milk. She can have tree nuts,
3:12just not like peanuts.
3:14>> It's butter with steak, that'd be cool.
3:16You just don't get cheese.
3:18What?
3:20Cheese is the best part.
3:22It's really hard to find things I can
3:23eat, especially when going to like a
3:25restaurant. Usually we end up at like a
3:27seafood restaurant, which sucks.
3:32But usually I eat like chicken tenders.
3:34That's about it.
3:37>> So, what are you going to do later?
3:38>> I
3:39think Jordan's going to come over and
3:41we're going to play softball.
3:43It took a very long time to find my
3:45confidence.
3:47>> Hey Amy, do you want to come play
3:48softball with me?
3:50>> I suppose. Here, hold my keys.
3:52>> It really started when I started playing
3:53softball. I was on a team. They didn't
3:56really care about the smell or anything.
3:57They wanted to help me be a the better
4:01softball player I That was definitely
4:02the turning point. That's where I really
4:05fell in love with the sport and really
4:08like started to buckle down and wanted
4:10to play
4:11and knew that that's what I wanted to
4:12do.
4:15I worked my butt off on the softball
4:17field.
4:18I worked my butt off in my pitching and
4:20I do my very best in school that I can.
4:26>> That got my palm.
4:29My whole palm.
4:30She's got a lot of talent and she's
4:32[music] really starting to love the game
4:34and getting good at it. She's got a lot
4:36of drive. She wants to be better than
4:38everybody else, [music] but she also
4:39wants to be better than her own self.
4:44I think it offers her a release to get
4:46her anger and her aggression out when
4:49she's frustrated.
4:52I don't think I could deal with the
4:53bullying and the
4:55all the craziness that she does every
4:57day and still be able to hold my head
4:59up.
5:00>> Um situations like
5:03going to softball tryouts or, you know,
5:05being on a team,
5:07job interviews, those situations really
5:09make me nervous because, you know, you
5:11never know how people are going to react
5:13to it, but, you know, I I know just to
5:16get through it.
5:18>> Hey Jordan.
5:20You ready to go play softball?
5:22>> Yeah, they're ready to go play softball.
5:31Yeah, I'm not that good of a pitcher,
5:32either.
5:33>> I like about [music] the best about
5:35Alyssa is that she can be mean, but nice
5:38at the same time.
5:43>> I think of her as a confident person.
5:47>> What?
5:51>> Nobody heard that, right?
5:53>> My advice for kids that are being
5:55bullied for anything would just be let
5:57it let it go.
5:59Just toughen up and get through it.
6:01I have to live with it. It's never going
6:03to go away.
6:04>> [music]
6:05>> I just know that I have to surround
6:06myself with people who don't notice it.
6:09My hope for myself for the future is to,
6:11you know, go to college. I want to play
6:12for Alabama.
6:14I want to, you know, get a really good
6:16job and I want to, you know, advocate
6:18for myself for the rest of my life.
6:25>> Morning.
6:26You okay?
6:27>> [music]
6:28>> Yeah.
6:29Okay.
6:31>> And how you feeling?
6:33>> Sore, but I'm all right.
6:34>> Chiari malformation is a brain
6:36condition. My cerebellum, which is the
6:39back part of my brain, is slowly
6:42slipping down into my spinal canal
6:46through the opening in the base of the
6:47skull. I eat my breakfast lying down
6:50because I'm in so much pain in the
6:52mornings that I can't sit up. I slowly
6:54have to bring myself up on the bed. So,
6:57I have to eat like this, but it can get
6:59quite uncomfortable.
7:00A really bad day I
7:03will not get up whatsoever. I'll be laid
7:05down the entire day.
7:07It mainly hurts at the back of my head,
7:10but my entire body usually hurts.
7:12[music]
7:13>> Every day you walk through the door and
7:15uh
7:17it's just
7:19it's just emotional.
7:21I'm sorry.
7:24You walk through with anticipation that
7:26it's going to be a good day.
7:28Talk to her 2 minutes
7:30and you know it's not going to be like
7:31that. It's not going to be a day like
7:33that.
7:34>> The headaches started when I was 7.
7:37Didn't think anything of them as they
7:38were
7:39barely anything. It was scary when I was
7:4114 and I felt really poorly that skiing
7:45holiday.
7:45>> didn't you? We didn't really notice much
7:47signs, did we, when you was young?
7:50>> When I was 14, the pain became
7:52consistent. I just felt more and more
7:54pain in the back of my head, my neck, my
7:56shoulders, down [music] my spine. I was
7:58getting weird tingling sensations in my
8:00arms and legs.
8:01>> She went from being a kid that does
8:03everything, skis, runs, loved dancing,
8:07to lying in bed 90% of the day. It was
8:10quite [music] shocking. We took her to
8:12the A&E three times and on the third
8:14time, Emily [music] was just in so much
8:16pain, they didn't know what to do to
8:18help her.
8:19>> I was finally diagnosed in October 2021
8:22when I was 15 after an MRI scan which me
8:26and my dad had to fight for. They kept
8:28saying to me, "Come back when it's
8:30worse." And my dad just said, "It can't
8:32get any worse. She she's bedridden, she
8:34can't do anything." He wouldn't leave
8:37until they looked into it more.
8:39>> It was a big relief when we got
8:41diagnosed cuz we knew, didn't we? We we
8:44had something, the reason why she was
8:46getting all these headaches [music] and
8:47and we had all these question marks
8:49before.
8:50>> At first, I didn't understand the scans
8:52very well. When I did start to
8:54understand, I noticed how severe the
8:55Chiari was. I did realize that my brain
8:58was herniating quite a lot.
9:00>> [music]
9:00>> This was my first ever MRI and my brain
9:05went all the way down. You can see the
9:07white bit around my brain, it's gray.
9:09There's barely any of it, but then on
9:11this after the decompression,
9:14how much more of that
9:16>> That's very good. Comparison is amazing,
9:18isn't it?
9:19>> I had decompression brain spinal surgery
9:213 months after being diagnosed. They
9:24removed a bit of my skull, [music] a bit
9:26of my spine, removed a bit of my
9:28herniating brain, and [music] replaced
9:31the brain lining with a skin graft from
9:33inside my head to expand it. It allowed
9:35fluid to flow around my brain, relieving
9:38the pain in my head,
9:39>> [music]
9:39>> my neck pain, my back pain. However, a
9:42lot of that has come back since my more
9:45recent one here, it's all slipped back
9:47down and there's barely any fluid around
9:49my brain again. This is my brain stem. I
9:51believe that goes down into the filum.
9:53>> And that's the bit they're going to
9:55they're going to cut.
9:56>> They're going to cut, yeah.
9:56>> Right.
9:57>> I'm hoping to have the filum terminale
9:59sectioning surgery in 3 or 4 weeks'
10:01time. I have to go to Barcelona for the
10:04surgery as it's not done in England and
10:07not performed under the NHS. I am having
10:09to pay a lot out of my savings, which is
10:12quite upsetting as those could be used
10:15for my future, but I'm I'm happy to
10:17spend them on this as hopefully this
10:18will give me my future. I play a lot of
10:21netball a week. I would do training two
10:24times a week, sometimes three. When I
10:26was 17, roughly a year after my surgery,
10:30I just couldn't handle the symptoms that
10:32were coming back anymore, so I have to
10:34stop. I'm hopeful about the surgery.
10:36Hopefully it'll give me a new chance at
10:38life. I'm more nervous of the fact if it
10:41doesn't work and if it doesn't help me
10:44as it seems to be my last chance to
10:46actually help the condition. Hi, yeah.
10:48How are you?
10:50>> I'm good. How are you doing, Emily? How
10:52are you feeling? Are [music] you getting
10:53any worse or or how are your symptoms?
10:56>> I'm struggling at the moment. It has
10:57been a lot worse the past few weeks. I
11:00first met Margo on a Facebook group
11:04where people talk about their Chiari and
11:07people who have had the filum surgery or
11:09are hoping to get the filum surgery talk
11:11on there, and she is a big advocate for
11:13the filum surgery.
11:14>> So, they go in and they make a 1-in
11:16incision at the base of your spine and
11:19[music] they clip the ligament and it
11:21releases the tension on the spine. Many
11:24people [music] get their neurological
11:26symptoms, you know, reduced. In my
11:27daughter, Caroline, hers was like a
11:29tight rubber band. [music] We had to get
11:31her handicap pass because she could
11:32barely walk. And 4 days after surgery,
11:35she was walking up a flight of stairs
11:36not [music] even holding on to the
11:37handrail. My other daughter, headaches
11:40were gone. She also had swallowing
11:42issues where [music] she felt like she
11:44had something stuck in her throat. That
11:46sensation was completely gone. Very
11:48miraculous for my kids.
11:50>> That is incredible. Gives me a lot of
11:52hope hearing that.
11:53>> Think of a positive outcome, think of my
11:55kids, and hopefully [music] that will be
11:57the case for you as well.
11:58>> Yeah.
11:59>> And you're definitely in good hands.
12:01>> Thank [music] you so much for talking to
12:03me about this.
12:04>> I wish you the best of luck. Please keep
12:05me posted.
12:06>> Will do. Thank you.
12:07>> Okay.
12:08>> Bye.
12:08>> Bye-bye.
12:10>> Hello.
12:10>> Hi.
12:11>> How are you?
12:12>> I'm good. How are you?
12:13>> I'm good.
12:15>> When Em's having a bad day and I'm
12:17coming over, normally she'll be up here.
12:20I'll just walk in our house. I'll come
12:22upstairs [music]
12:23and I'll just sit here with her. It's
12:24just really nice that we can do that.
12:27Over time I have unfortunately lost
12:29quite a few friends. People have accused
12:31me of faking the condition. A lot of my
12:33friends [music]
12:34unfortunately didn't believe me. I know
12:36that my condition's real. I know that I
12:38struggle with it and I don't blame those
12:40who do think that as they don't
12:42experience it so they don't know, but I
12:44just hope through me spreading awareness
12:47that more people understand and not as
12:49naive about chronic illness. I decided
12:52to make a TikTok account about my
12:54condition and try and spread awareness.
12:56I've had many good reactions, positive
12:59reactions, and a lot of people come back
13:00to me telling me that I've helped them,
13:03which is crazy. That's an amazing
13:04feeling. That's what I want.
13:06>> Bringing the Chiari situation to the
13:09forefront to as many people's lives as
13:11she can is is going great. [music] So
13:12I'm super proud in that sense. Super
13:14proud.
13:14>> I just want Emily to get back to normal,
13:17be able to do the fun things, be a
13:19typical 18-year-old instead of [music]
13:21laid down all the time. Yeah.
13:24Good to see her having fun again.
13:26I do hope that me talking about the
13:29illness and my struggles helps other
13:32people talk about those and also [music]
13:34just understand more and know they're
13:36not alone.
13:41I'm now 4 days post-surgery and I
13:43thought I'd give a little bit of an
13:44update. I woke up after the surgery and
13:47I had immediate relief. [music] I didn't
13:48have any pain in my head. Previously, I
13:51couldn't sneeze or cough without being
13:53in absolute agony. I have sneezed and
13:54coughed since the surgery and with
13:57little to no pain in my head, which is
13:59absolutely crazy.
14:04>> Do you want to look at some of these old
14:05albums I found?
14:06>> Yeah.
14:08>> Look how little you are there.
14:10>> I know I look about the same, just
14:12chubbier.
14:13>> [laughter]
14:14>> When you were born, you were 6 lb and 5
14:16oz.
14:17>> [music]
14:17>> You were tinier, but it's not
14:20it's not super, you know, super super
14:22tinier, but you were smaller than your
14:24brothers.
14:25When I was pregnant with Kaylee, she was
14:27my fourth child. I had three other boys
14:29and I had it felt just like the
14:32pregnancy with them. I noticed no
14:33difference at all.
14:36>> Progeria's a rapid aging disease. Causes
14:39you to lose your hair and makes you
14:41smaller, age faster.
14:45>> When Kaylee was diagnosed, I'd never
14:46heard of progeria, so I [music] was um I
14:49was scared. When she was born,
14:52they didn't know anything [music] was
14:53wrong. It wasn't until she was about 6
14:55months, we went to the doctor and she
14:57was 9 lb 6 oz. They really [music] kind
14:59of started freaking out a little bit.
15:01Finally, right after she was a year,
15:04that's when they finally diagnosed her
15:05with progeria after we'd already seen
15:08specialists for about 6 months,
15:10different [music] ones.
15:11>> And fifth grade was when I stopped
15:13growing.
15:14I am 3'8" and I'm 35 lb.
15:19I was 3'9" Was I 3'9"?
15:21>> You were about 3'9" until you had your
15:23hip surgery.
15:23>> Yeah, and then they cut me down an inch.
15:27I thought they should have gave me an
15:28inch.
15:30I had my hip surgeries because my hips
15:32were dislocating.
15:34I can just about walk as far as like a
15:37mile or so. I have to use a wheelchair
15:40if I'm [music] like with a group of
15:43people and we're walking a far distance.
15:46Obviously, it's hard for me to keep up.
15:49>> Here are the photos from your clinical
15:50trial.
15:52>> I think they're getting ready for a
15:53blood draw. The experimental drug that I
15:55was on,
15:56it helped a lot of progeria kids. It
15:59slows down the aging and it
16:02helps me
16:03live longer and all that. I mean, it
16:06does have a lot of side effects with
16:08like
16:08>> [music]
16:08>> stomach problems and all that stuff, but
16:11it's still worth it.
16:12I really don't like being pitied [music]
16:15just because I've had this condition my
16:18whole life. It's nothing new to me. When
16:20I first started posting on social media,
16:23it was definitely in elementary school.
16:25Every time someone like with progeria
16:27passes, I'll get [music] like the amount
16:30of comments of rest in peace goes way
16:32up. My comments are like arguing about
16:35whether I'm alive or not.
16:37Some of them even argue with me. I'll
16:38comment back and be like, "No, I'm still
16:39alive." And they're like, "No, you're
16:40not." I'm like, "What?"
16:43But I'm still here.
16:45My progeria does not define me. I just
16:48>> [music]
16:48>> try to post positivity and show people
16:51my personality and
16:53that even with progeria, it doesn't make
16:56us any different. Some of the nice
16:58feedback I get on my social media is
17:01just people
17:02>> [music]
17:02>> calling me an inspiration. There's some
17:04people say that I'm pretty.
17:08I'm eating my friend Faith and also my
17:12friend Kaylee. I've known these friends
17:14since I was in kindergarten, so we're
17:17very close and we hang out every
17:19weekend. Who do I look up to the most? I
17:21guess everybody. I'm only 3 8, so
17:24everybody's above me. I look up to them
17:26all.
17:28>> [laughter]
17:29>> I do have my license, so I am looking
17:32forward to when I finally get my van
17:34modified to my height, so
17:37that I can be more independent.
17:44>> Hey.
17:45How are you?
17:48>> Good.
17:49>> Oh, that looks great.
17:50>> Thank you.
17:51>> You're welcome.
17:52>> Oh, that looks so good.
17:53>> It does look really good.
17:54>> I like your hair.
17:54>> when we met there in hip-hop?
17:56>> Yes, it was hip-hop.
17:58>> Mhm.
17:58>> Cheer dance. We did have cheer dance
18:00too.
18:00>> And we killed it.
18:01>> Yeah. How old were we then?
18:03>> It had to be like first grade,
18:05kindergarten.
18:06>> Yeah, around yeah.
18:08>> Yeah.
18:09I believe like it's just right when I
18:11met you, like we definitely like clicked
18:14right away. And I felt like we're going
18:15to be friends like forever and clearly
18:18we are.
18:19>> There's just like so many crazy
18:20memories. I don't even know where to
18:21start. Really long time ago when we had
18:23like big sleepovers with like everyone
18:25on the team. Oh,
18:27we you would always be the judge in our
18:30like
18:31ugly dance offs or whatever. And then
18:34you would have the like big microphone
18:35or whatever
18:36>> [laughter]
18:36>> and you would always be like, "Next up
18:38to the stage."
18:40Those were fun. Whenever I'm in a room
18:42with you, I'm just always laughing
18:44>> [music]
18:44>> and many memories of just laughing.
18:48>> I just really appreciate how like
18:50passionate you are about like whatever
18:52you do.
18:55>> I don't dance anymore because of my
18:57hips, but I've been painting for about 3
19:00years or so. I like to just see what I
19:03can paint, like try to challenge myself
19:06to do something harder and harder
19:08>> [music]
19:08>> every time I paint.
19:10>> She wants people to like her for who she
19:12is. I was talking to one of her teachers
19:14and she [music] said to me, "I forgot
19:17Kaylee even has her, you know,
19:19progeria." Like once you get to know
19:20her, you forget because her personality
19:22is so big.
19:24>> My biggest goals for the future, I
19:26guess, is
19:27to just be independent and be able to
19:30drive myself places, [music]
19:32having a good job, maybe possibly living
19:35on my own, but my mom thinks I should
19:37live in the backyard in a tiny [music]
19:40house. I don't think that. But, um, I
19:42got I want more pets, so that's why I
19:45want to move out so I can have more
19:46pets.
19:47And I [snorts] want to study human
19:49resources.
19:50>> [music]
19:51>> My attitude on life is just to be
19:53positive.
19:56>> Harry needs an infusion once a week
19:59because he's got a compromised immune
20:01system. And since he's been having it,
20:04he's only maybe been hospitalized twice.
20:07It's literally a lifesaver.
20:09Okay.
20:11>> Yes, do it.
20:11>> Are you ready?
20:12>> Yes, do it.
20:13>> One, two, three.
20:14First one.
20:15>> You do them quite slowly.
20:17>> Do you want me to do it faster?
20:18>> A bit faster.
20:19>> faster. Okay. One, two, three. There we
20:22go.
20:22>> That was better.
20:23>> Was that better? Oh, okay. Good.
20:26>> Everybody, it's me, Harry. What else we
20:28say?
20:29>> How old are you?
20:30>> 19.
20:31>> Yeah?
20:31>> Maybe 20 soon. [music]
20:32>> Yeah, you might be 20 soon, yeah? And
20:34what's interesting about you, do you
20:36think?
20:37>> I'm small.
20:38>> You are quite small, aren't you? Do you
20:39know how tall you are?
20:40>> 3 ft 10.
20:41>> 3 ft 10. Yeah. Are you ready?
20:44>> Yes.
20:44>> One, two, three.
20:47Harry's got a condition called N bass.
20:49So, that stands for neuroblastoma
20:52amplified sequence. [music]
20:53It affects many, many aspects of his
20:55body, pretty much all of them. He's
20:57registered blind. He's [music] type 1
20:59diabetic. He's autistic. He's got
21:02brittle bones, as well.
21:04>> How long do you have to Just there for
21:05your infusion, Harry?
21:07>> Usually, about an it now.
21:08>> Yes, it takes about an hour to go
21:10through, doesn't it?
21:11>> Usually an hour.
21:11>> Yeah, it's not too long. [music] There
21:13we go. Do you want your headphones?
21:15>> Yes, please.
21:15>> Yes, please. Okie doke. Think about
21:17[music] 3 months old. He just got a
21:20normal checkup and the doctor said, "It
21:23doesn't look right to me." It took about
21:27I think about 10 years for him to get a
21:28proper diagnosis.
21:30>> How rare is the condition you have?
21:32>> Very rare.
21:33>> Mhm. It says
21:34>> Almost impossible, in fact.
21:37>> Yeah, not many, is there?
21:38>> [music]
21:38>> They started researching to M bass
21:41but then funding ran out. There's us and
21:43another family as well that are
21:45currently trying to raise funds
21:47to keep the research going because it's
21:50so rare. That we know of, there's 20
21:53cases worldwide.
21:56Should we unplug you?
21:58Okay, are you ready? 1 2 3. All right,
22:00you can go and get dressed. It's pretty
22:02much 24-hour care with Harry. It's like
22:04every part of his disability has some
22:06sort of impact on his day-to-day.
22:11There's one arm.
22:14Two arms.
22:15>> Okay.
22:16>> Okay.
22:16>> [snorts]
22:17>> But at the same time, he's also very
22:20easy to look after [music] because of
22:22his autism. Because everything is so
22:24structured with him. You ready for some
22:26lunch?
22:27>> Yes, lunch, please.
22:28>> Yes, what do you fancy?
22:30>> A ham sandwich.
22:32>> It's quite easy doing like his food
22:34because he's so specific. It has to be a
22:37certain type of butter and a certain
22:39type of bread.
22:40>> [music]
22:40>> But that's it. Ham sandwich and half
22:42pint of milk.
22:44Can you manage?
22:45>> Yes.
22:45>> Yeah.
22:47There you go. Is that all right?
22:49>> Sure.
22:50>> People have said
22:51>> [music]
22:51>> they can't tell whether he's five or he
22:53could be 55. He's quite a gentleman.
22:56He's quite old-fashioned. [music] He's
22:58His little phrase is, "It's important to
23:00be accurate." What are we doing later,
23:02Harry?
23:02>> I don't know.
23:03>> No? If the weather stays nice, you want
23:06to go and feed the ducks?
23:07>> No, I'm not going on that walk.
23:10>> Go in the car, then.
23:11>> If we drive down there, it'll be so much
23:12better.
23:13>> Yeah, we can drive, it's fine. It's not
23:15a problem.
23:16>> I'm never walking down there ever again.
23:18>> Oh, okay.
23:19>> And when I say ever, I mean never.
23:22>> Okay.
23:23He doesn't really socialize with adults
23:25his own age. [music] You know, my my
23:27friend's daughter is a good friend of
23:30his, but she's seven. Because of his
23:32learning disability and his learning
23:33delay, they get on great.
23:36>> Do you like being different from other
23:37people, Harry?
23:38>> Yes. But, thing is, if I was in if I was
23:42older if I was if I was in the city by
23:44myself,
23:45>> Mhm.
23:45>> I bet I bet some ruffians and thugs
23:47would find it easier to pick on me.
23:49>> Ruffians and thugs might find it easier
23:51to pick on you.
23:52>> Yes.
23:53>> But,
23:54>> Yes.
23:55>> you wouldn't really be on your own,
23:56would you?
23:57>> No.
23:57>> No, you've always got me with you,
23:59haven't you?
23:59>> I'm a different person on my own.
24:01>> If you were on your own, yeah. When he
24:03was younger,
24:05it was particularly teenage kids that
24:07could be quite cruel. So, you know,
24:09getting on buses at school pick-up times
24:12and stuff were really difficult. Whereas
24:14now, because of his TikTok,
24:16>> Everybody, it's me, Howie.
24:18>> it's now are they looking at him because
24:21he's different or are they looking at
24:23him because they're recognizing him. 3 2
24:261 go.
24:27>> Everybody, it's me, Howie.
24:29>> Hello. How are you?
24:30>> I'm fine.
24:31>> Okay. So, what did you want to talk
24:33about today?
24:34>> Komodo dragons.
24:35>> Yes.
24:35>> Komodo dragons
24:37are cannibals.
24:40>> Yes, they are.
24:40>> Oh, that's gross.
24:41>> What do you expect? It's nature.
24:44>> True.
24:44>> And there's nothing you can do about it.
24:46>> No, I know. And massive pause for
24:48thought about TikTok. I was like, nope,
24:50absolutely not. People will be awful.
24:54And then when he got to 18, as much as
24:55I'd like to shield him and protect him
24:57from things,
24:59he's still an adult who's got to find
25:01his own way in life and this was
25:03something he really wanted to do.
25:05>> What do you like about going on TikTok?
25:08>> Fun.
25:09>> What is it that you like saying there?
25:11What do you like to talk about on there?
25:12>> Dinosaurs.
25:13>> Yeah.
25:14>> Tell her about when you thought I went
25:15on [music] TikTok for the first time
25:17about everybody.
25:18>> Yeah, I was worried, wasn't I, about
25:20people?
25:21>> Yes.
25:22>> I was worried that people might be mean.
25:25But was I wrong?
25:26>> Actually, yes. Tell me how wrong you
25:28were.
25:28>> I was so wrong. Couldn't have been more
25:30wrong. You get lots of messages from all
25:32over the world, don't you?
25:34>> I want to be famous.
25:35>> [music]
25:35>> No. What do you think makes someone
25:36famous?
25:38>> I don't know.
25:40>> Would you like to be famous?
25:42>> No. No. I'm not doing this for fame and
25:45glory.
25:46>> No. What are we doing it for?
25:47>> Fun.
25:48>> Just for fun. It's lovely that other
25:50people
25:51>> [music]
25:51>> can see what we get to see every day.
25:54And they get to see this side of him as
25:55well, you know, because he calls a spade
25:58a spade. He can be a bit brutal at
25:59times.
26:01Let's have a look. Make sure we've got
26:03everything.
26:04>> Okay.
26:05>> Diabetes kit and
26:07food for the dogs.
26:09Don't forget your cane.
26:14Okay?
26:17Right. Are we ready?
26:18>> Yes.
26:19>> Yeah. Right. Let's go then.
26:20>> Why do we have to do things perfectly?
26:22>> Cuz it's good to be accurate.
26:25>> Hey, you can't accurate me. I'm the one
26:28who's accurate.
26:31What's so funny?
26:32>> You.
26:35Harvey starts farming college in
26:37September and we are very excited about
26:39it. Looking around placements for him
26:42for once he left school was just like,
26:44what are the choices for people with
26:46disabilities? And then
26:49somebody mentioned a farming college and
26:51it was just perfect.
26:53>> It looks like they remembered me.
26:55>> I think they have remembered you. Oh,
26:57look, they're all coming over now.
27:00Are they now?
27:02What are you looking forward to about
27:03college? Which bits do you think you're
27:04most excited about?
27:07>> The animals.
27:07>> The animals.
27:09>> My hopes for him are
27:12just for him to enjoy
27:14his life. You know, there's no
27:17expectation [music]
27:18of him. He can do whatever he wants.
27:21It is a life-limited condition.
27:24We don't know to what extent. So, it's
27:26it's very important to us
27:28that he just has a great time.
27:30>> [music]
27:30>> I'm unique.
27:32>> You are unique.
27:33>> I'm different.
27:34>> Yeah.
27:35Does it make you feel special being
27:36different? [music]
27:37>> Yes.
27:38>> You don't have to
27:41be put in a box.
27:42You don't have to conform, do you? You
27:44can be and do anything you want, no
27:46matter what, you know, what your
27:48differences might be.
27:50Cuz you can do anything you want, can't
27:52you?
27:52>> Yes.
27:53>> Yeah. You can be anything you want.
27:55>> Yes.
27:56>> Yeah.
27:59>> I'm Shala. I have uncombable hair
28:02syndrome, which is a genetic condition
28:04that I can't control, which makes my
28:05hair easily breakable and uncontrollably
28:08fuzzy. Makes my hair a lot different
28:11than normal people's hair
28:12>> [music]
28:12>> and quite hard to brush.
28:14>> Shala was diagnosed with uncombable hair
28:16syndrome roughly about 5 years of age
28:18when she [music] went in for a routine
28:20dental procedure and the anesthetist at
28:22the time happened to do a bit of
28:24research in the genetics [music] behind
28:25uncombable hair syndrome, but also some
28:27of the other implications that the
28:28condition comes with like brittle bones
28:30and teeth and [music] fingernails. So,
28:32just other things that we needed to be
28:33aware of throughout her life.
28:37Well, this one is when you graduated at
28:38kindergarten and that wasn't too far
28:40from when we just found out about your
28:41hair. We noticed Shala's hair wasn't
28:43from birth cuz her hair was perfectly
28:45normal when she was born, but around 3
28:46months of when her baby hair kind of
28:48fell out and worn out, that's when this
28:50fuzzy kind of soft, [music]
28:52fluffy type of hair was growing through
28:54and that was probably
28:55our first indication [music] that
28:56something was different. Oh, that's one
28:58of your very first baby pictures at home
29:00when you came home from the hospital
29:01with Shayla. [music]
29:02>> Wow.
29:03>> When we actually trusted him enough to
29:04leave you with him.
29:06Managing Shayla's hair has been [music]
29:08an absolute challenge. We've gone
29:09through phases where it would just
29:10completely break off. We've gone through
29:12phases where there was no growth
29:14occurring that was with it. So, the
29:15length we've kind of got at the moment
29:17with Shayla's hair is probably the
29:18longest it's been, but it hasn't gone
29:20past.
29:21So, over the years we have tried a lot
29:23of different techniques with Shayla.
29:24With accessory items on her hair that
29:25are hot are absolute no-go cuz it burns
29:27very quickly like baby hair.
29:29>> I have experienced bullying. Definitely
29:30in primary school it happened much more
29:32often.
29:33>> What they used to call you?
29:35>> Uh fairy floss,
29:38fun fun afro,
29:41uh mainly names like that.
29:42>> Some of the assumptions that we've heard
29:44is that jokes around her sticking her
29:45finger into a power socket and making a
29:47bit of a joke [music] about the
29:48appearance of it. A lot of people
29:50believe that we've got some genetic
29:51throwback, that she's got black ancestry
29:53or something along those lines. So,
29:54again, it's just sometimes people's
29:56ignorance rather than just accepting her
29:57for who she is and what she looks like.
29:59It's always that question of [music]
30:00why, why, why.
30:03A lot of the comments were based around
30:04the lack of maintenance or the way that
30:06it [music] looked and presented and it
30:07was uncombed and unbrushed, which wasn't
30:09actually true. It was just the best at
30:10time that we were able to do with her
30:12hair without causing any further damage.
30:16>> When I was little, people always used to
30:17come to touch me, but now I'm older I
30:19have set boundaries so people don't do
30:21it anymore.
30:22>> Some of the implications of this
30:23condition for Shayla is just really
30:25looking after [music] the management of
30:26her hair, making sure that we take extra
30:28care as opposed to using heat or um hot
30:30items or different types of products.
30:34>> I have definitely learned to love my
30:35hair and come to terms with it cuz it
30:37makes me unique and different than other
30:39people.
30:41I'm most than of that all my journey I
30:43can influence people to accept [music]
30:44themselves for who they are and to be
30:47unique.
30:47>> My favorite thing about Shilah is that
30:49she's a very creative person. I believe
30:50my sister is a role model because of how
30:52she posts on Instagram to raise
30:55awareness for people with her condition.
30:58>> We actually set up [music] Shilah's
30:59Instagram because we wanted to connect
31:00with other people and we wanted to get
31:02some more insight into her condition
31:03itself [music] and tips and tricks from
31:05a wider community.
31:08>> My hopes for the future I hope to
31:10continue to encourage people
31:12believe in themselves and accept who
31:14they are.
31:20>> I'm going to say I've had around 25 like
31:23different fractures or breaks over the
31:24course of my life.
31:26I broke my ribs getting out of bed.
31:31I broke my nose falling down the stairs.
31:34Talking about teeth.
31:37That one just like completely chipped
31:38off at the back because I had decided to
31:41try Cinnabon for the first time. I don't
31:44know how it was very soft. I have a rare
31:46form of brittle bone disease called
31:48hypophosphatasia, [music] HPP for short.
31:51HPP is a inherited genetic disorder that
31:54causes [music] your body to not be able
31:57to produce enough alkaline phosphatase
31:59which is necessary and obviously the
32:01production of bones. [music]
32:03I was only diagnosed at 17 years old but
32:06I know I broke countless bones before
32:08that. The first time my family and I
32:11realized that I had broken a bone I was
32:13around 5 years old. My mom was the only
32:15one who was home. She heard me like
32:17bloodcurdling scream and rushed [music]
32:20to find me like clutching my arm.
32:23I broke my elbow in more ways than one.
32:27I managed to [music] break the electron
32:31which apparently kids aren't supposed to
32:32break. They did not fix it correctly
32:34back then [music] so we're still dealing
32:36with the effects of that now. Probably
32:38been close to a month now since surgery.
32:41When you break your olecranon and break
32:43the growth plate and everything going on
32:45in that elbow and they don't fix it
32:47properly, things [music] don't go well.
32:49In my case, the doctor told me that
32:51there was a ligament that was directly
32:53pressing on the ulnar nerve pretty much
32:55at all times and it caused [music]
32:57severe sensory loss in the arm and
33:00because of that, we did have to pop that
33:02baby open and decompress it. Have this
33:05little guy. My family, they don't really
33:08bring 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
33:16various ways I've broken things.
33:19They try not to give me something to be
33:22sad about, you know.
33:23I've got the little bow knees here.
33:25>> Yeah. When she was first learning to
33:27walk, she was actually bow-legged as
33:30well as she would not walk on her own
33:33feet. She would walk to toed and on all
33:36fours, which is actually a pretty much
33:38almost a 100% indicator of this disease
33:41because they don't have the strength in
33:43their own bones to hold them up. And no,
33:45that's not a develop differently kind of
33:48issue. That is an actual disease issue.
33:51>> I've got these tubes in my nose. My mom
33:53has been supportive [music]
33:55and has been by my side pretty much my
33:56entire life and has been accompanying me
33:59to all of my various doctor's
34:00appointments, especially [music] the
34:01ones before I was like 18 and wasn't
34:04really in a place where I could [music]
34:07advocate for myself.
34:08>> Even when she had her serious break,
34:12still nobody picked up on that there was
34:13something wrong. There are so few
34:15doctors that even recognize what this
34:18is. You really have to fight.
34:20>> think I would have gotten this diagnosis
34:23or really any of the diagnoses I've had
34:25if she wasn't there with me. It was
34:28bittersweet because [music] it was like
34:30obviously great knowing the answer, but
34:34it was kind of depressing because
34:37[music] it was like that's the sentence
34:39that you have to live with for the rest
34:41of your life and there's nothing [music]
34:43you can do about it.
34:45>> Even after the diagnosis, we never told
34:47her not to do anything cuz I don't want
34:50her to feel like she's limited.
34:52>> Has it affected [music] your confidence?
34:56>> To an extent, but it's not necessarily
34:59the HPP [music] itself that affects my
35:02confidence. It's more so how people
35:04react to me having HPP that affects
35:07[music] my confidence and how they treat
35:09me differently for having it. They act
35:12like I'm made of glass and if they like
35:15touch me, oh my gosh, I'm going to
35:16shatter into a million pieces. I've kind
35:19of discovered that living my life in
35:21fear and in with caution [music] the
35:23entire time, that's not going to help me
35:27really at all.
35:28I believe the first video I ever did
35:31make was just about like one of my
35:34breaks and a conversation between me and
35:36my doctor and that video did really
35:39well.
35:40>> How did this happen?
35:41>> I got out of bed.
35:43>> What?
35:44>> I got out of bed, okay?
35:46>> So I started making some educational
35:48videos.
35:48>> I have a rare form of brittle bone
35:49disease known as hypophosphatasia.
35:51>> Most people do respond pretty positively
35:54and naturally some people ask about
35:56brittle bone disease and want to know
35:58more information. And so I do like to
36:01respond to [music] those comments
36:02because I mean I have no problem with
36:04those comments. But then there's a lot
36:05of people who have various
36:07misconceptions [music]
36:08or are just uninformed and are rude
36:10about that.
36:12One of which is just drink some milk.
36:14Have you tried cheese? [music]
36:16Fake. You don't have blue eyes. I had to
36:20go in and explain that. I don't know
36:22which brittle bone disease you're
36:23referring to. So yeah, that that was
36:25fun. It doesn't really necessarily
36:27bother me anymore, but I don't
36:29appreciate the misinformation [music]
36:31being spread because that's harmful to
36:34anyone with HPP hearing it.
36:37People who have HPP, they all walk on
36:40their toes. And people have been making
36:42fun of me for doing that my entire life.
36:45So, I've decided screw the haters. I'll
36:47just wear heels so they can't yell at
36:49me.
36:52Hey you, Mom. Are you ready to go?
36:55So, today I'm going to be going to
36:58physical therapy to continue working on
37:00my arm.
37:02I've only really had, I'm going to say
37:04maybe like four sessions.
37:06>> So, let's just start with the ulnar
37:08nerve glide.
37:09>> [music]
37:09>> We're definitely just trying to work on
37:11making sure that the area that was
37:13decompressed has feeling again, making
37:16sure I can move the fingers it properly
37:18like everyone else can.
37:20>> So, these are nerve glides. They're just
37:22gliding the nerve through where she had
37:24surgery. So, that that nerve is not
37:26going to get caught on scar tissue or
37:28any of the swelling that's going on
37:30after the surgery.
37:31>> I broke my elbow 15 years ago and they
37:34didn't fix it properly and somehow,
37:37someway this apparently happened. Is
37:39that [music] surprising to
37:41>> Not necessarily. I mean, they probably
37:43just didn't put it in the correct
37:44[music] position which would have put
37:46more pressure on that nerve over time.
37:48>> More sore?
37:50Aching in that one spot?
37:51>> Sensitive.
37:52>> Yeah.
37:54It's definitely like
37:56sore. [snorts] So, it's working the
37:58muscles there so then obviously I'd like
38:00to get things working again.
38:02>> We're on week three at this point.
38:04[music] So, about probably about three
38:05more weeks.
38:06Have a good weekend. We'll see you next
38:07week.
38:08>> Thank you.
38:12Every disability is different and
38:13[music] so everybody can take something
38:15different from this story. I think they
38:18should try to live as normal of [music]
38:21a life as they can in spite of their
38:23disability.
38:25>> Despite having this, she's [music] just
38:28as capable. Nothing's going to stop her
38:30as long as she keeps going forward.
38:32>> [music]
38:33>> I know she can do it because she's
38:34strong.
38:35>> A little ironic.
38:40I refuse to let [music] this one part of
38:43me and my life
38:45define everything about me. I'm more
38:48than just [music] that.
38:50And everyone else is, too.
38:54>> My name is Olivia Klopchin. I'm 17 years
38:57old and I was born with a condition that
38:59causes my arm to swell.
39:02I have a vascular malformation [music]
39:05and more technically mine is a venous
39:07malformation. So, my arm gets blood
39:11clots because my veins [music] aren't
39:14regular veins. They're very wide and
39:17they constantly expand. I like to think
39:20of it as [music] a hose.
39:22If the hose is too big, the water's not
39:25going to be able to get through it with
39:26a regular spout. So, [music] it's going
39:29to kind of slow down and my arm clots
39:31up.
39:32I was first [music] diagnosed when I was
39:34only a couple months old. I was still a
39:36baby and the doctors originally thought
39:39it was just a bruise.
39:46>> When Olivia was first [music] diagnosed,
39:49um
39:50it was very frightening. We had this
39:53little tiny child and had [music] no
39:55idea really what was wrong with her.
39:58>> Some of the worst things people have
40:00said, it's mostly been online. I think I
40:03was [music] 12 and somebody messaged me
40:05who I went to school with out of pure
40:08anger. They just called me the Hulk.
40:10It was the Hulky, you look like Hulky.
40:13And I back [music] then was very hurt by
40:15it because I had never been called
40:17anything like that. I'd never compared
40:19myself to anything like that.
40:22I think that [music] I'm just a
40:23beautiful person and that nothing is
40:26ever going to be able to affect that.
40:29What I see in the mirror now, I [music]
40:31I love myself. So, I started posting on
40:34social media because I personally had
40:37never seen anybody with it before. I
40:40wanted to bring awareness. It's
40:41important for me [music] because I felt
40:45lost when I was younger because the only
40:47people I'd ever seen with anything
40:49similar to me were in a hospital. And
40:51so, putting myself out [music] there and
40:53meeting all these people meant I wasn't
40:55alone anymore.
40:58>> She has blossomed into an amazing young
41:01woman. Very, very proud of her. She
41:04always stood up [music] for herself.
41:05It's her normal, even though it's not
41:08everybody else's normal.
41:10>> So, today I'm going to be challenging
41:13myself to go to a lake in Vermont
41:15[music]
41:16in the wintertime and take pictures with
41:20no coat on.
41:23I'm really [music] excited about the
41:24photo shoot. I mean, it's cold. I don't
41:27necessarily enjoy the cold, but I like
41:30to challenge myself to try new things.
41:34I want to achieve [music] the message of
41:35spreading body positivity by taking
41:38these photos, showing that you can be
41:40brave no matter what you're doing, even
41:42[music] if it's out in the cold in below
41:44zero weather. It's cold.
41:46>> [laughter]
41:47>> Okay, let's go.
42:01So, that was a really awesome
42:03experience. I've never done anything
42:05like [music] that. It was super
42:07exciting.
42:08I would definitely recommend trying
42:10something more out of your comfort zone.
42:13The message I would like to put out to
42:14the world from my story is that
42:16everybody is beautiful and all of our
42:18differences [music]
42:20define who we are as a person and we
42:22should stop hiding them. What I wish for
42:24in my future is to see others like
42:27myself
42:28putting themselves [music] out there
42:29into the world and not being afraid of
42:31who they are.

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