- 3 months ago
00:00 - Introduction
01:11 - Kiersten & Friedreich's Ataxia
09:42 - Steffni & Duchenne Muscular Dystrophy
16:59 - Alexandra & Williams Syndrome
24:38 - Alex & Living With 6 Chronic Illnesses
32:44 - Chris & Moebius Syndrome
40:14 - Buddy & Nablus
01:11 - Kiersten & Friedreich's Ataxia
09:42 - Steffni & Duchenne Muscular Dystrophy
16:59 - Alexandra & Williams Syndrome
24:38 - Alex & Living With 6 Chronic Illnesses
32:44 - Chris & Moebius Syndrome
40:14 - Buddy & Nablus
Category
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FunTranscript
00:00I am gradually losing control of my muscles over time.
00:04I was a varsity cheerleader.
00:06I was the girl who would get thrown in the air.
00:09Now it is hard to get on the stairs.
00:11My spine is curved into a S, so it's compressing my right lung.
00:16And I live my life with 15 screws in my head.
00:18The thing on my head is called a halo, and it is stretching out my spine.
00:24My rare condition means I love everyone.
00:28Williams Syndrome is a super rare genetic condition,
00:31characterized by cognitive and developmental issues.
00:35I worry people will take advantage of her,
00:37but I will always be there to protect my sister.
00:40My rare conditions cause me to have debilitating pain.
00:43It feels like there's fire ants crawling up my legs, biting me.
00:48I've never been able to smile.
00:50I can't make facial expressions.
00:52I can't move my eyes side to side.
00:53It's almost like a face not even a mother can love, which is pretty harsh.
00:57All these certain people in the world have my rare condition.
01:01It makes me look like I'm wearing a mask.
01:04We didn't know how long he's going to live or what kind of life he has to go through.
01:10My name is Kirsten.
01:15I am 22.
01:16I have pre-trix ataxia.
01:19It causes progressive coordination loss in all of my muscles.
01:26It takes me a little bit when I get up to get ready for the day.
01:31Growing up, I never would have thought I would have this.
01:37I always thought I would be the person who could still do backflip when they were 30 years old.
01:46Typically, when you get diagnosed, the doctors say you'll lose your walking in about 5 to 10 years.
01:55It affects speech as well.
01:57It can cause heart problems.
02:00Sometimes, sometimes, when I'm more tired, I'm scared I'll fall.
02:04I do fall sometimes.
02:08Dad, will you help me bring my coffee out?
02:12Both my sister and I have a F.A.
02:15They first suspected something with my sister.
02:20She was having some balance issues.
02:23I think the first time that I noticed something was wrong, I think, when we went on our family vacation.
02:28I could kind of see her walk in her gate.
02:31I was like, it looks a little off.
02:33We really then just put Lauren kind of through the gauntlet for the next four months,
02:38going from doctor to doctor to doctor, trying to figure out what all this was.
02:42I remember vividly the balance test.
02:45I was like, I feel like all the tests they're doing to her and she's struggling with, I'm struggling with too.
02:54She did the balance test where she closed her eyes and she fell over and I'm watching her do that.
03:00And I closed my eyes and I kind of started swaying.
03:03They took my blood.
03:05My test results came back two weeks later.
03:07I was numb.
03:08I did not want to believe it.
03:10I didn't want anyone to talk to me about it.
03:13I was totally freaked out.
03:16My disease is progressive.
03:18So what I can do now, I won't be able to do in two years, four years.
03:23It is hard to stay positive when it is such a hard diagnosis.
03:27We try to continue encouraging you guys to live your dreams.
03:31They've changed a little.
03:32The diagnosis was definitely hard on my parents
03:36because no parent wants to hear that their two daughters both have a rare disease that's progressive.
03:44They don't really show that they're upset or struggling, but I'll catch them maybe being upset on their own.
03:51And they'll try to act okay and strong for me, but I know it has to be really hard.
03:56You guys, you know, are now holding down careers and doing awesome.
04:02Just pushing through this and saying we're not going to let this defeat us.
04:06And here we go.
04:08It is terrifying knowing that I am going to lose functions in the future.
04:16I honestly try not to think about it.
04:19But when I do, I try to turn that fear into working out and fighting it.
04:29Keep those elbows straight.
04:31Physical therapy now is a way to kind of work out my stress and my anger.
04:37It's a stress reliever, and I feel really accomplished when I finish a physical therapy session.
04:44It's difficult to watch, but we know it's necessary, and we know where we're at,
04:48and we just got to keep pushing forward.
04:50All right.
04:54Here's my day in the life of living with Friedrich's ataxia.
04:58What are some of the negative assumptions people have made about your condition?
05:01People think I'm drunk.
05:04There have been instances where people are mean, like bouncers, and they're like,
05:09I don't care.
05:10You're making it up.
05:12I have spoke on TikTok about this topic, and it was crazy to me how many people there are
05:19that do not care about people who have disabilities.
05:23They're like, if you have a disability, you shouldn't be out drinking.
05:26I am a human.
05:27And I do deserve to go out and have fun and have social interactions.
05:32But it does really get to me because I'm like, they don't know me.
05:36They don't know my story.
05:37Like, how dare they?
05:38I want anyone with a rare disease to know that you are not alone.
05:46Hello.
05:47How are you?
05:48I'm good.
05:48I missed you.
05:49Come on in.
05:50Today, my friend Madison is coming up.
05:55She knew me before diagnosis, and after diagnosis, she has been the greatest support.
06:02Do you remember when the day I got diagnosed and I called you?
06:07Do you remember that conversation?
06:09I do.
06:09It was so sad.
06:10I was so sad.
06:11I cried a lot.
06:12I cried a lot that day.
06:14I thought I would be that 40-year-old mom who could still do a backflip on the man, but...
06:21If you would have asked me, I would have betted on it as well.
06:24Yeah.
06:25Growing up, I was a varsity cheerleader.
06:27I was the girl who would get thrown in the air, and I'd be on one leg, they'd throw me up
06:32and catch me on the other leg.
06:34How does it feel just looking at these now?
06:37I don't know.
06:37It kind of makes me sad.
06:39Is it?
06:40Yeah.
06:41It does.
06:42Some of your pictures took care.
06:43I love that picture.
06:45Is it hard that you know that you can't do stuff like that now, considering you were an
06:51athlete your whole life?
06:52Yeah.
06:54I feel like I have this crazy skill, and that got taken away from me.
06:59I miss being able to dance.
07:02I wish I could still dance, and I've lost that ability.
07:07She wants to have fun.
07:09She wants to dance.
07:09She wants to have all of these experiences.
07:17And she can't.
07:18And for me to see that is hard.
07:24I wish I could just pick her up and take her out there and dance with her.
07:27Like, I always have to remind myself, it's okay.
07:31You're okay.
07:32Everything's fine.
07:34It was all about the fun, the friendships, and you can't ever take that stuff away.
07:40You're right.
07:40Nobody can ever take those from you.
07:43Yeah.
07:43You'll have those forever, those memories, for sure.
07:45We wouldn't have been so close if we didn't cheer together all these years.
07:50I love you.
07:52I am hoping in the future there is going to be a cure, and I'll never lose my walking.
07:58But even if I do, I just really hope with the future of the family someday and still do the things that make me happy.
08:08We love fishing.
08:09This was actually our first date ever.
08:12My boyfriend knew that I had F.A. when I first met him.
08:16In the past, guys have been totally freaked out by F.A. and their families.
08:20And they were like, you don't want to date a girl who's going to be in a wheelchair.
08:23When we first met and I first told you about F.A., what was your initial reaction?
08:31At first, I had no clue what it was, but I did a little bit of research, and I mean, it doesn't have no issue with it for me.
08:40And it's scary at all?
08:41No, it's not really, no.
08:42He is very understanding.
08:45He knows that I do get a lot more tired than he does, and he will step it up and help me when need be.
08:52I've had a few people ask if I'm comfortable to be there to support you, and that's totally something I'm willing to be here for.
08:59And I'm thankful to have you with me.
09:02I hope that people know that if they have a disability or they're newly diagnosed with a health condition, that it's not going to stop you from finding love and living your life to the fullest.
09:17You can find options to do the things that you love to do.
09:20My perspective on life, I am grateful for, and I wouldn't have had that if I was not diagnosed with Friedrich's ataxia, because I like to live my life to the fullest.
09:32I like to be happy, and I just try not to let the little things get me down in life.
09:39So this is my CPAP machine that I use when I am sleeping.
09:50The muscular dystrophy affects my lungs, and during the night when I'm sleeping, I stop breathing.
09:56So this stops that from happening.
09:58My condition is muscular dystrophy and scoliosis.
10:01My muscular dystrophy is luchenne, and it mainly occurs in males.
10:06It's very rare in females, like one in 50 million.
10:10I've never met anyone else with my condition in a female.
10:15There is no cure for the condition that I have, and it is slowly progressive over time.
10:22So these are the medicines that I take daily.
10:25Muscular dystrophy affects a lot of things in my body, so I depend on medicine, you know, to live every day.
10:33There were no signs at all of the Duchenne's muscular dystrophy when I was born.
10:38My mother didn't realize anything until I was around two.
10:42I was constantly falling down when I was walking, and I wasn't catching myself, so she ended up contacting the doctor about it.
10:51They did inform my parents that I wouldn't make it past seven years old.
10:56So the thing on my head is called a halo, and it is for my scoliosis.
11:02It's trying to straighten it out as much as possible with the traction, which is what I'm being pulled with.
11:11Scoliosis is a disease that affects your spine.
11:14My spine is curved into a S, and it is all leaning on my right side, so it's compressing my right lung, like as if someone's pushing on it.
11:27I have had this halo for 15 years so far.
11:31I got it when I was 11.
11:33It was surgically placed, and the screws are, like, screwed into the skin pushed against the skull.
11:39I am not able to have scoliosis surgery due to my muscular dystrophy, so my halo is permanent, and I'll have it for the rest of my life.
11:48I do not feel the halo, like any pain from the halo, but I do feel the tension against my spine, so it's just a stretch, basically.
11:57Growing up with the halo, it most definitely made me feel very different from other people.
12:04I was very self-conscious about my halo and what people were going to say or kids were going to say.
12:10Now when I see myself in the mirror, I've learned to accept me for me.
12:15Maybe around 21, I finally came to terms with, you know, this is how it's going to be, and one day it will get worse, but we're going to live on until that day comes.
12:26Hello.
12:27Sleep good?
12:28Yeah.
12:29You ready for breakfast?
12:31Let me put you in your walk, okay?
12:33I need help from basically anyone around.
12:37My mother is my support throughout every day.
12:41So the walker is to help with moving my legs and getting me out of the chair from the sitting so I could stretch and stuff.
12:50And I like to use the walker to eat at the table.
12:53More?
12:54Yeah.
12:55There.
12:56There?
12:57Mm-hmm.
12:57I have leaned on my family a lot.
13:01It's been tough.
13:02It's been a journey.
13:04I don't think I could live without my family or be the person that I am without them.
13:08Ooh, ready yet?
13:09Hey.
13:10Hey.
13:10Hey.
13:10Hey.
13:10How are you doing?
13:12All right, all right.
13:13All right, you ready to eat?
13:14Yes, ma'am.
13:15Hey, mama.
13:16How are you doing?
13:17Hey.
13:17How are you doing?
13:18Okay.
13:19When they told me she would live past seven, it just hit me very hard.
13:24They took everything in to keep on going.
13:27And then when they actually put the halo on, we had to stay there for three months at the hospital.
13:34And for me, it was very stressful because you know how you don't want your children to be in no pain.
13:40It was a pretty risky surgery, so we were all kind of on edge about it, but we knew it had to be done.
13:47Her back was curved pretty good.
13:50At the time, you know, we were stressed out, but it worked out for her, and that's the blessing that we did have, so.
13:55I'm sitting here with her today, so.
13:57I could tell it bothered her at times, you know, people staring all the time when we go to places.
14:03But I think she motivates herself.
14:06She's a strong young lady, and she likes to live.
14:11Over the time, she's been grooved to understanding and seeing that life is what it is, and she's enjoying it and living to her best and doing what she likes to do.
14:20She's definitely the strongest person I know, where she's been to my children.
14:24Even with her condition, like, she's been the best aunt that you could ask for, literally.
14:29Has the biggest will to thrive and keep living.
14:33She could be an inspiration to others.
14:35Show them that you still live life to the fullest, regardless of what condition it is.
14:40I started posting about a year ago.
14:44I've always wanted to just inspire one person.
14:47Like, I used to tell myself, if I can inspire one person, like, my life is complete.
14:52Like, it's my goal.
14:54I was terrified of the backlash and everything or what people would say.
15:01Hey!
15:02How are you?
15:03Good, how are you doing?
15:05It's been a while.
15:06My friend, Brianna, she's seen it all and she's gave me the confidence to continue doing what I'm doing and enjoying myself.
15:13I have an idea.
15:14We should go live and, like, say hi to the fans and everything.
15:18Yeah.
15:19Everybody.
15:20We can do that.
15:21See who comes on.
15:22I knew she had been on TikTok for a little while.
15:26Being on that platform has its ups and downs.
15:29Someone said, sad she can't stand up for herself.
15:32This looks like an execution.
15:34Does she want to play hangman?
15:36And then there was one time I said, God damn it.
15:40Nobody want to see this.
15:42Why is it on my feed?
15:44So we get stuff like that.
15:47When people are leaving those mean comments on her TikTok, it makes me very angry.
15:53It's just a bunch of haters around the world.
15:57I don't like it at all.
15:58A message that I have for people that have judgment is, you can never make me hate my life.
16:04You can never make me hate myself.
16:06And you give me the energy that I need to keep going.
16:11I'm just glad that she's finally getting it out and telling everybody, like, hey, this is me. Accept me for me.
16:18And she's making a difference.
16:19Proud of her.
16:20I am glad to be born different because it makes me unique.
16:25And it makes me who I am.
16:27Being different is okay.
16:28There's nothing wrong with it.
16:30I get asked that question.
16:32If I could change my life or something about me, would I?
16:35And I honestly can answer that and say no.
16:38Because I was put on this earth this way for a reason.
16:41I have a great life at the end of the day and I'm blessed.
16:44And I really don't think I would change anything.
16:46It's not easy, but I promise to never give up.
16:49Always remember, it's just a bad day, not a bad life.
16:54I'm about to call all my friends.
17:01Oh, Lord have mercy.
17:03Hopefully it works.
17:04I'm Alexandra.
17:05I'm 27 years old and I have Williams syndrome.
17:09I'm Victoria.
17:10I'm 30 years old.
17:11I'm this one's sister.
17:13Williams syndrome is a condition kind of like down syndrome, but we're missing chromosome 7.
17:22It's characterized by cognitive and developmental issues.
17:27Along with the developmental delays, they also have very like highly social personalities.
17:33Hi, I'm Alexandra. I have Williams syndrome.
17:36They all have an affinity for music.
17:38Do you know Nickelback?
17:39I do.
17:40Love that band.
17:42They have similar facial features and y'all have a wider mouth.
17:47And then y'all, they usually all have like the starburst blue eyes.
17:52A lot of y'all do.
17:53Oh yeah.
17:54If you came close to my eyes, you would see it.
17:57Hi.
17:58I talked to my friends that have the same Williams syndrome.
18:03She's made Williams syndrome friends from all over the world.
18:08They Facebook Messenger all the time, like all the time.
18:11I'll be like sewing and I'll look over and some of them are sleeping and they're like watching each other sleep.
18:19Some of them are like dancing and doing their own thing.
18:22We're really crazy.
18:24What do y'all ask me to do to Alexandra when y'all are on the phone?
18:27Oh, no, no, no, no, no. I know where this is going. Don't.
18:31Huh?
18:32And to go home.
18:33And to go home.
18:36It doesn't feel tiring to match her happy energy.
18:40She's always been that way. It's always been a consistent in my life.
18:43Me and my sister spent every day together.
18:46I love hanging out with her.
18:48We are going to the thrift store to find new items so we can create something really cool today.
18:58Put your shoes on, girl.
18:59Sometimes we argue.
19:01I mean, we're sisters. That's what sisters do.
19:04She's a precious sister. That's why.
19:07Where's your jacket?
19:08Throw me mine.
19:09Mm, thank you.
19:14Totally threw it, so I threw it.
19:16You did.
19:17You did throw it.
19:20My parents were always very open and honest about her disability.
19:25Our mom, she took her out of school and she got homeschooled where she could have the one-on-one attention that she actually needed.
19:32It was kind of in that point where kids aren't so as accepting.
19:38When they kind of get to that age where they start forming friend groups and, oh, she's a little different.
19:43That's something I really, I don't think she would have been able to handle.
19:47But she didn't have to go through that.
19:49No.
19:50Are you happy?
19:51Are you happy about that?
19:52Oh, yeah.
19:53Oh, this is not as cute as I thought it was.
20:01She has so many cute clothes.
20:04It's ridiculous.
20:06I love clothes.
20:08They're so pretty.
20:09Well, we like fun, happy, funky clothes.
20:14It's kind of hard to find, so we just make our own.
20:17It's like treasure hunting.
20:19We like treasure hunting.
20:21And then we like creating, so we treasure hunt and create all at the same time.
20:26That's funky.
20:28What does it make you feel when you find something that you really like?
20:31I get excited immediately.
20:34She goes like this.
20:36She got blue nails.
20:38You're so cute.
20:40Are you a people person now?
20:41Yeah, if I know them well enough.
20:44Yeah, but back when you were younger, it wasn't if you knew them well enough.
20:49I used to love hugging people that I didn't know because it made me happy.
20:55She would.
20:56So she would wander off and just give anybody a hug, which is sweet.
21:00And most people don't mind.
21:02But, you know, some people do mind.
21:04Not everyone is friendly.
21:05Not everyone has good intentions.
21:07It took a while for you to understand that.
21:10Victoria taught me not to.
21:14I worry people will take advantage of her, but I will always be there to protect my sister.
21:19In the car.
21:22Good job.
21:23So the mottos that are on our clothes, we try to use phrases that are like be yourself, stay weird, normal is boring.
21:32You know, if you're weird, that's fine.
21:33Like embrace how you're unique.
21:35I love that one.
21:36You like this one of you?
21:38Yeah.
21:39It says normal is boring and it has the Williams Syndrome logo on there as well.
21:44So any of our items like t-shirts wise that we make that has the Williams Syndrome logo, we donate a portion of our profits to the association.
21:53These colors match together.
21:55You like those colors together?
21:56Yes.
21:57So I do the sewing because I enjoy it and she like has no interest in sewing.
22:04But she helps.
22:05You want to cut it?
22:06When she cuts, it's a little jagged, but I like that.
22:09It just adds some uniqueness to it.
22:11She likes to, I mean, have the final say so on the designs to make sure that they're Alexander approved.
22:19So all of the designs have been Alexander approved before they go on the website.
22:25And I'll get something and I'll say, what do you think about this?
22:28And she'll be like, no, that's ugly.
22:30And so I'll try again until-
22:31I'll be honest with you.
22:33I will tell her how it is.
22:35This one's one of my favorites because it has me on it.
22:40You cut off the bottom to this to make it like frayed and worn looking.
22:45And who models the clothes when they're done?
22:52Oh, okay.
22:54Walk towards me with your model walk and runway go.
23:01And then strike your pose.
23:03Good job.
23:04Alexander, how do you feel when you're modeling?
23:07I feel good.
23:09She's the best model.
23:11Oh, oh, I look good.
23:14Which one you think?
23:16Oh, that one's cute.
23:17You like that one?
23:18Yeah.
23:19I like that one.
23:20And we make videos.
23:22Yes.
23:23For what do we make videos for?
23:24TikTok or Instagram.
23:26Are you ready?
23:27Yeah.
23:28I feel like I have tried to create platforms to where it is positive and there is love.
23:35Everyone gets trolls and it would really irk me when they would make comments on my sister.
23:42And that was part of the reason why I was hesitant in the beginning to even put her on social media.
23:46I mean there are things that could get her down but she chooses not to so it makes me proud.
23:53Just the way that she loves and cares about people is a good reminder for me to just see the world from her point of view.
24:04Because I think our world, especially nowadays, just needs a lot more of that.
24:09Why are you proud of me?
24:11So you have been there for me since I was born?
24:15Yeah.
24:16But I'm always going to be there for you.
24:20That's what sisters are for.
24:24Huh?
24:25You should be happy with what makes you unique.
24:29Because normal is like really boring.
24:31Yeah.
24:32Yeah.
24:38So I start my morning on this PEMF mat every day.
24:42It is a pulse electromagnetic frequency mat.
24:45And basically what that does is like penetrates your body with infrared heat, helps decrease inflammation.
24:52That will help anybody with like an autoimmune disease or chronic illness, chronic pain, and have a little bit of relief.
24:58I have six chronic illnesses.
25:00For all of my conditions, there's no cure.
25:02The rarest one that I have though is PAN.
25:04That one's been difficult to deal with.
25:06PAN is the acronym for polyarteritis nodosa.
25:10It is a degenerative form of vasculitis that impacts your small and medium sized blood vessels.
25:15Causes your organ systems to slowly fail because your veins get so swollen.
25:20I was super lucky and I got diagnosed early in my whole journey with PAN.
25:25The PAN had impacted my nerves.
25:27And that injury caused me to develop CRPS or complex regional pain syndrome.
25:32CRPS is a serious pain condition.
25:34I'd say my pain's at like a five and a half right now.
25:37Thank you so much.
25:39I wake up some days and my pain is a 10 and usually that's a let's call my doctors and see if I need to go to the hospital.
25:46But if I can get through it at home, that's ideal.
25:49It's no fun going to the hospital.
25:51On really bad weeks, I'm crying when I wake up.
25:54My body literally feels like it's on fire.
25:56It's hard to treat.
25:57It's hard to control.
25:58And when it is active, it's unbearable.
26:01How are you doing? How are you feeling this morning?
26:03It's like a five when I woke up, but I feel like it's like a six right now.
26:06Need to get something in my stomach so I can have meds.
26:09My husband and I met when we were 19.
26:12I know that I'm able to live a normal-er life because of Cooper.
26:16Every morning when I wake up, he's out in the kitchen making me my smoothie, organizing my pills,
26:21and just making sure that he is enabling me to have a good start to my day.
26:25He wants me to conserve my spoons and energy so that we can use those for something fun together.
26:30He unlocks life for me.
26:32This will be the only thing that we really have until lunch just because she usually doesn't feel good.
26:38She doesn't like to eat and the meds kind of upset her stomach.
26:41So this is just the base layer.
26:43Breakfast of champions.
26:45And I think that's it for this morning.
26:47But we have a lot more to get through on this day.
26:51It was January of my junior year that my health took a nosedive.
26:55Cooper and I were going out to dinner or something and I remember looking at him as we were getting ready
27:00and I just said, I am in so much pain right now.
27:02Like I can't go out to dinner and instead we went to the emergency room.
27:05And then I got sicker.
27:07By 2018, 2019, I was really, really sick.
27:12Couldn't get out of bed.
27:14Ended up quitting my job.
27:15You were having these crazy pain flare-ups where you were just like...
27:20Passing out, having seizures.
27:22Yeah, you were so dramatic.
27:24And that was really scary to not know what I could do to help you.
27:28When I got that call that I was having PAN, it was a, hey, you have a disease.
27:34There's no cure for it.
27:36It only gets worse from here.
27:37And it felt like my heart fell out of my body.
27:40The first rheumatologist I saw about it, they told me I had four months to live.
27:43So that then scared the out of me.
27:45Is this going to ruin my life?
27:47Am I going to die?
27:49Am I going to have to change everything about myself and how I live?
27:52On the really bad pain days, it is life stopping.
27:55That's when my body's on fire.
27:57It feels like there's fire ants crawling up my legs, biting me,
28:02that I have my hand over a hot flame or touching a cast iron that's on.
28:08It's debilitating.
28:09Cooper takes on way more tasks.
28:11If I switch into a bad day or if I start with a bad day,
28:15he goes into full caregiver mode.
28:17I think the hardest part of living with chronic pain is that
28:20sometimes you just don't feel safe in your own body.
28:23And that's a very weird sensation to experience.
28:25It doesn't matter how many different things you do,
28:28you're not in the driver's seat.
28:30I am still not feeling good.
28:32I'm a little worried we might need to call Julie today.
28:34All right, let's do it.
28:36No matter how sick I am right now, it could always get worse
28:39and that scares out of me.
28:40I'm always on high alert.
28:42If starts to roll, it gets bad fast.
28:44And when it does, I call my nurse.
28:46She's on speed dial.
28:47She just drops what she's doing and she comes here.
28:49Hi, Julie.
28:50Hi, Alex.
28:51Oh, your blood pressure's good today.
28:54Honestly surprised.
28:56I thought it would be not good.
28:58When I get IV hydration infusions,
29:00it's usually when I'm having really high symptoms.
29:03I'm calling her saying, hey, I just talked to my doctors
29:06and they want me to go to the ER, but I really don't want to.
29:09Can we try to do an IV hydration at home?
29:11And if that works, then I can avoid the ER and everyone's happier.
29:14Sometimes it kicks in in a couple of hours,
29:17but a lot of times my patients feel it right away.
29:20Keeps me out of the ER.
29:21Keeps her out of the emergency room.
29:24First, I was just a content creator,
29:26and then I started dabbling in the influencer scene a little bit.
29:28Save your spoons and pace yourself kind of thing.
29:31I think it's really important to document my condition
29:34when I'm not feeling well and when I'm feeling well,
29:37because I really want people to see, like,
29:39what a life with chronic illness looks like in its entirety.
29:42When I looked around online, it was a lot of educational content creators.
29:46What I didn't see was somebody sharing their full life,
29:49the good days too, but also, like, how bad the bad days were,
29:52and to show how wide of a life we live having chronic illnesses.
29:57I think when a condition isn't visible,
29:59it's so easy to jump to conclusions that somebody is faking it,
30:03that they're exaggerating, that their flare-ups are for attention.
30:07Every now and then I get the occasional keyboard meanie,
30:10the big ones that percolate to the top are like,
30:13you can't be in that much pain, you look normal,
30:17or, like, you look happy or you look pretty or whatever.
30:19And the fact is, like, pain doesn't look a certain way.
30:22I'll be honest, like, some days are really hard to find positivity.
30:25I find that when I'm having low moments, I lean on Cooper a lot.
30:30I lean on my family a lot.
30:32Will you get my computer? I want to FaceTime my dad.
30:34This is the perk of having a dad as a doctor.
30:37Hi, Dad.
30:38Hey, how are you guys?
30:40Coop, Alex?
30:41Feeling a little bit run down because of this IBIG stuff, but it's okay.
30:45It happens.
30:46My dad is the Surgeon-in-Chief at IUPUI.
30:51Having a parent that is in the medicine field
30:54when you have such complex, rare diseases is so comforting
30:58and, like, honestly, one of the best blessings.
31:00You're unique, as you know, right?
31:03You've got a bunch of different things going on, so it's not simple.
31:06I remember crying at a coffee shop with my dad saying,
31:09I don't think I'm going to get better.
31:10I'm only going to get worse from here.
31:12Why should I even keep trying?
31:13My dad just looked at me and said,
31:15medicine keeps evolving, honey.
31:16Like, you got to hold hope.
31:18Sit with it.
31:19Be with your family.
31:20We're going to get you through this.
31:21And, honestly, that was the words I needed to hear at that time.
31:25You just got to keep checking off until you get to the exact right place
31:30and then just stick with it.
31:31I mean, just listen to you over the last 30-some years
31:34as you've kind of battled through all this stuff.
31:36Thanks, Dad.
31:37Give mom a squeeze for us.
31:39Yeah, I love you, DC.
31:40Thanks.
31:41Get some rest.
31:42Recovery, okay?
31:43Sounds good.
31:44I think I want people to walk away after hearing my story
31:48and know that hope can exist in any situation.
31:51I feel very hopeful.
31:53And I think that has to do with the fact that I have accepted
31:56that I have a chronic illness,
31:58that my life does look different than other people,
32:01that I am worthy of getting care and feeling okay and good
32:05by whatever means that takes,
32:07and that if I have an unconventional body,
32:09I can and get to live an unconventional life.
32:12I truly think that every experience that we have in life
32:17is for a reason.
32:18When I look back at being born sick and getting sicker as an adult.
32:24If it's led me to here, I don't think I would change it.
32:27Having a chronic illness doesn't mean your life is over.
32:29I think it's like being grateful,
32:31choosing to look at the good side of things
32:34or like still finding the good out of things
32:36and just being unapologetically yourself as you deal with it all.
32:42For there is a lot better when I look back at being born.
32:45I never find this.
32:47Mobius syndrome affects my day-to-day life
32:48because human interactions are something that's extremely difficult for me.
32:54When I try to snobble with Mobius syndrome,
32:56only one time my face moves down like this.
32:57So this one moves right here,
32:59So this one moves right here, but this other side is just completely dead no matter what
33:04I do.
33:05So this moves, but this one doesn't.
33:07My name is Chris and I have a rare condition called Mobius Syndrome.
33:10It's a disability that affects the 6th and 7th cardinal facial nerve.
33:14So I can't make facial expressions, I can't move my eyes side to side.
33:17I've never been able to smile basically on my entire life.
33:21I can feel smiling, but when I look in the mirror, I can't see myself actually smiling.
33:26When I look in myself in the mirror growing up, it was just a constant gain of questioning
33:31why I was the way I was.
33:34Growing up with Mobius Syndrome was definitely a really hard upbringing because a lot of kids
33:38didn't really understand.
33:39I just dealt with a lot of harassment, people, you know, seeing me as an outcast, an alien.
33:45I'll get picked on a lot.
33:47They'll call me like fish boy, anything relating to like an animal that has like big licks,
33:52jungle man.
33:53My school was kind of a really bad period for me because I had like no friends at all.
33:58There'll be days where I'll just talk to my parents and that's it.
34:01How are you?
34:02I'm good.
34:03How was your day?
34:04I'm good.
34:05Same day as Shepard.
34:06When Christopher used to speak, even us as parents, we were just able to get like only
34:1250 percent.
34:13The rest of the other 50 percent, we had to figure out.
34:17It was hard for him to come out of his shell.
34:21He likes to stay in his little corner.
34:25Christopher's confidence was like a long journey.
34:30I learned at 16 that there is a procedure where you could take either a muscle from your limb
34:36or another part of your body and insert it around your jaw to kind of construct a, you
34:41know, artificial smile.
34:42The surgery would cost $300,000 at the time.
34:45And, you know, that's a lot of money.
34:47So I was like, hey, I need to figure out how I can do this.
34:50I tried every, you know, ethical way I could just make money online.
34:55And I just kept working and working and working.
34:57It may be hard to believe, but right now my business is actually doing $50,000 a month
35:01in revenue and around $25,000 a month in profit.
35:06Since Christopher built his business, wow, that's like a big change.
35:18Now I see a young man totally confident, like talking with strangers, like from zero to 100.
35:31When I actually started, you know, making money, it kind of really changed my thought on the
35:37surgery as a whole.
35:38That's when I really started to realize like, hey, I'm not supposed to complain over things
35:43I cannot control.
35:45And that's what put me in the mindset to kind of just start my journey of acceptance.
35:49This is my biggest day ever.
35:51We made $8,112 in a single day, which is crazy.
35:56And then this is my second biggest day in an hour, made $2,500.
36:01And I realized that it wasn't necessarily the disability in doing my success and making
36:07me have like mental health issues.
36:09It was the way I felt about myself.
36:10So my business kind of forced me to take my life a bit more serious and change my day
36:15to day actions, which led me to actually being successful.
36:18Yo, Tony.
36:19Yo.
36:20Can you help me record a TikTok real quick?
36:21I got you, bro.
36:22With the business I do, a lot of people were telling me, you can't do this unless you show
36:27your face.
36:28In 2020, I started posting on TikTok.
36:31I didn't take Madison to my own hand and decided to change my life.
36:34Who knows who I would be?
36:35I was pretty nervous when I started showing my face on TikTok because I didn't know how
36:38people would react for the longest.
36:40I just wanted to stay completely anonymous.
36:42At first, he was like kind of showing his face, like side profile.
36:45I had to tell him like, bro, like you look normal, like you really look normal to me.
36:50If you post, you'll get more interactions with people and it would just feel like more
36:54organic and go.
36:56This business model is something that's untapped and is the number one best way to quit your
37:00job in 2024.
37:02From the legit first post, people started sorting in, they're like, whoa, what is going
37:07on here?
37:08I think I'm a computer generated AI, like a soulless being or something.
37:13I don't know.
37:14Yeah.
37:15It's the comments are kind of funny.
37:18This guy commented, God just be making anything these days.
37:22Somebody put an alien emoji.
37:24It almost said a face not even a mother could love, which is pretty harsh.
37:28But again, I didn't.
37:29I like humor.
37:30It's kind of like dark humor.
37:32You know what they say, though.
37:33If you don't got haters, you're not doing anything right.
37:35Exactly.
37:36Exactly.
37:37When we first started seeing those comments, we obviously hated it at first.
37:41I hated it for Chris because people were really saying some bad things on the Internet.
37:46But after time, we realized that we could just beat this with humor.
37:50Personally, I laughed.
37:52I think it's actually extremely hilarious and it has zero effect on me at all.
37:57You said you look like a dry sea whore.
38:00A dry sea whore.
38:02I never heard that one before.
38:07Oh my God.
38:08That's crazy.
38:09Oh my God.
38:10My achievements in business have really changed how I feel about myself in general.
38:16To me, it's not really about the money.
38:18It's just about having the freedom and being able to just do what I want to do.
38:24When I actually was able to buy my drink car, I thought it was really good.
38:27It was like an unbelievable feeling.
38:30When it came out, it was roughly worth around $80,000.
38:33So I'm pretty lucky to drive a car like that, kind of my age.
38:36Like sometimes I go to grocery stores, I get out, people are like, what the, you know?
38:40Because they don't really expect me to get out that car.
38:43I don't want to achieve a goal in a maze scene unattainable to me now.
38:46I always reflect to where I was back then and it really, you know, puts me in a position
38:52to realize that I'm capable of doing great things and everyone else is as well.
38:56I'm super proud of myself for just actually getting to that point of digging myself out of
39:02the mud because in the beginning, I could never really see myself truly getting out of this.
39:09I am so proud of Christopher, so proud.
39:12He knows what he wants, he has like a goal, he stays like focused, and he's a hard worker,
39:19a baby hard worker.
39:21The way I've seen Chris change as a person, he became like a better big brother, you know?
39:26He tries to motivate me every day to get on top of my stuff.
39:30And he's very, he's very positive now.
39:33I see a young man, like, with like resilience, ready to fight and overcoming like his disability.
39:44And I think all parents will be proud to have a son like Christopher.
39:48Any young entrepreneur living with a rare condition, I just want them to know that anything is possible.
39:54As cliche as it sounds, like I literally had nothing.
39:56I was just a normal kid that would get made fun of every single day, really had nothing going for me.
40:02But I just changed the actions around me, and that led me to success.
40:06Just keep showing up every single day as much as you can, and you will see change.
40:11I have a hard time especially growing up because I didn't know how other people were going to treat me, and I was nervous about how I look.
40:24I have a rare condition called Natless.
40:28It's actually a super rare condition.
40:31There was a study back in 2018 that showed that only 13 people had this condition.
40:38At least it's a face mask syndrome.
40:41So for my kids, it made my eyes very tiny.
40:44I cannot straighten all my fingers all the way.
40:47And it also affected my throat, so that's why I found this way.
40:54I had a really hard time with how people couldn't understand me.
40:58That's one of the things that kind of frustrated me when I was growing up.
41:03Morning, Mom.
41:05How old were you when you were diagnosed with this syndrome?
41:09Around the time I was in elementary school.
41:11I was rough, you know, I wasn't treated like other kids.
41:15So it kind of made me feel like, yeah, I'm kind of different from everybody.
41:21I had a lot of kids making fun of me because they don't usually see someone who looks like me all the time.
41:27Then as I got older, I realized, hey, this is how the world's going to be.
41:32I can't really change how other people think about how I am.
41:35My parents helped me a lot emotionally, especially through all my surgeries.
41:40I had a couple surgeries when I was younger.
41:43They actually tried to do surgery on my eye, but they couldn't open it.
41:48And then I had another surgery on my throat, which is my palate, because no one could understand me.
41:55When he was born, we didn't know anything.
41:59We didn't know how long he's going to live or what kind of life he has to go through.
42:06I have no idea.
42:08He had to go through so many surgeries.
42:11I was, like, really heartbroken.
42:15At the beginning, it was rough.
42:17And so I was like, yeah, why is all of this happening to me?
42:20But as I learned along the way, this is going to be like the early blocks.
42:25This is what I'm going to be.
42:27I'm going to use this one day to inspire people.
42:31Unfortunately, sometimes people look at him or how he looks like.
42:37I saw a lot of, you know, time.
42:40He has struggled.
42:42He fights with those situations.
42:45I'm so proud of him that he never really complained.
42:49I think his mind, from the beginning, burns strong.
42:54Really not.
42:55As I look around, I see a lot of people, like, complaining.
42:58Complaining about very small things about their lives.
43:01So I was like, all right, I'm going to take the example of a man who never complains about anything.
43:07He's just music it.
43:09And that's what I want to teach my kids to do.
43:13If they have the same disability as me, like, you've got to go through life like a warrior.
43:19How important was it having your mom there for you through everything?
43:23Oh yeah, it was super important that she'd be there.
43:26You know, because who else am I going to go through it with?
43:29Thank you, Mom.
43:31Of course.
43:33My three-year surgeries weren't 100% successful.
43:40So, hey, I'm going to go see my doctor.
43:44I might ask him, hey, like, maybe for another throat surgery, would you do?
43:49Or another mouth surgery where I can open my jaw a little bit more?
43:53What about your eye?
43:55Yeah, I might ask him about that, too.
43:58I'm hoping there will be options for me so I can speak and see you easier.
44:05Hey, buddy.
44:07Long time no see.
44:08Long time no see.
44:09Good to see you.
44:11Yeah, good to see you.
44:12It's been a while.
44:13You're 21 now.
44:14Yeah.
44:15I was there from your first minute of being alive.
44:18Isn't that crazy?
44:19Why don't you hop on up and let's get started?
44:21Yeah, all right.
44:22So, how's everything going?
44:23Health-wise, are we doing okay?
44:25Yeah, everything's been doing all right.
44:27I've been doing a lot of workouts.
44:29Yeah, it looks- I've been exercising a lot.
44:31It looks like it.
44:32Yeah, you're looking good.
44:33You're looking good.
44:33But you've had a long road, right?
44:35Yeah.
44:36You've had to see a bunch of other doctors and a bunch of other specialists.
44:40You've had some surgeries, too, right?
44:42Yeah, and we're not so successful.
44:44So, I'm hoping in the future it's going to be a surgery or something that we can do to fix that, you know?
44:51Yeah, yeah.
44:52Well, you know, your condition is so rare that I think a lot of this we're sort of learning as we go.
45:00And I think even for the specialists, none of them have had to deal with a case like this.
45:05So, a lot of it is sort of new and experimental.
45:09Luckily, there's a lot of smart people out there doing research on this now.
45:12So, you know, yeah, hopefully we'll have some solutions, you know, coming our way.
45:16Yeah.
45:16But you know the amazing thing about you, buddy?
45:19Yeah.
45:19You've got a great sense of humor about the whole thing.
45:22And that's how you've been from when you were young.
45:25And that's why I've just enjoyed seeing you there in the office.
45:27Yeah.
45:28I'm grateful.
45:29Yeah.
45:29No, no, I'm grateful.
45:31So, I learned a lot.
45:33I consider myself lucky to have met you and to have learned about this condition.
45:39Because, again, there's not many doctors in this world that know about this condition.
45:42Keep in touch.
45:43I'm always here for you.
45:44Good to see you.
45:45Good to see you.
45:46You take care.
45:48Yeah, thank you.
45:49If you're currently dealing with any type of low surface food or insecurity, then listen
45:55to this.
45:56So, I started making Instagram videos back in 2024.
46:00And all my friends were like, hey, you're really good at giving advice.
46:04You're good at giving inspiration to others.
46:07So, why don't you start content creation?
46:09And then I just started, like, going out the line from there.
46:12And it blew up pretty quickly, actually.
46:14Like, within just a few weeks, I had, like, 10,000 followers.
46:18I got a lot of comments on my team.
46:21People calling me different things.
46:23Like, I get this one comment a lot.
46:25The engine final boss.
46:27At this point, it kind of makes me crack up a little bit because it's like,
46:31I really do look like an engine final boss.
46:37Buddy's an awesome person.
46:38Awesome soul.
46:39The most impressive, I would say, is just his ability to just take whatever challenge
46:43and just go into it full steam ahead.
46:46How's it making you feel, bud?
46:47I'm going to feel really great.
46:51How's that, bud?
46:52Yeah.
46:52This one good?
46:53Yeah.
46:53All the way in?
46:54Yep.
46:55Everybody's going to play a lot of different games, you know?
46:59One, two, three.
47:03And the way I kind of learned is that you can do two things.
47:06You can do anything or you can kind of swim it off and be like, yeah, okay,
47:12you got your things very much.
47:14Once you look at him, it kind of makes you go inside yourself and kind of understand,
47:19like, none of us really have excuses.
47:21I was in awe from day one and he earned my respect instantly.
47:27The way I'm approaching right now is not merely a sense of pride or sadness,
47:31but more like, I'm grateful.
47:33I'm grateful to have my career.
47:35I'm grateful to have, like, people around me.
47:38I'm grateful for everything that I've been put through.
47:41Challenges, obstacles, opportunities, whatever.
47:44I'm grateful.
47:45Whatever makes you different, it brings you.
47:48Because that makes you who you are.
47:51That's what's going to make you special.
47:53One final message I sing.
47:55The universe is great, your life is great, and you are great.
47:59Bye for now.
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