Up next in 10
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
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0:00
I am gradually losing control of my muscles over time
0:04
I was a varsity cheerleader. I was the girl who would get thrown in the air
0:08
Now it is hard to get on the stairs. My spine is curved into a S, so it's compressing my right lung
0:15
And I live my life with 15 screws in my head. The thing on my head is called a hey love, and it is stretching out my spine
0:24
My rare condition means I love everyone. Williams syndrome is a super rare genetic condition
0:30
characterized by cognitive and developmental issues. I worry people will take advantage of her
0:37
but I will always be there to protect my sister. My rare conditions cause me to have debilitating pain
0:43
It feels like there's fire ants crawling up my legs, biting me
0:48
I've never been able to smile. I can't make facial expressions. I can't move my eyes side to side
0:53
It's almost a face not even a mother could love, which is pretty harsh. All these certain people in the world have my rare condition
1:01
It makes me look like I'm wearing a mask. We didn't know how long he's going to live or what kind of life he has to go through
1:13
My name is Kirsten. I am 22. I have pre-trix ataxia. It causes progressive coordination loss in all of my muscles
1:25
It takes me a little bit when I get up to get ready for the day
1:30
Growing up, I never would have thought I would have this. I always thought I would be the person who could still do backflip when they were 30 years old
1:46
Typically when you get diagnosed, the doctors say you'll lose your walking in about 5 to 10 years
1:54
10 years. It affects speech as well. It can cause heart problems. Sometimes when I'm more tired
2:02
I'm scared I'll fall. I do fall sometimes. Dad, will you help me bring my coffee out? Both my sister and I have FA. They first suspected
2:17
something with my sister. She was having some balance issues. I think the first time that I
2:24
noticed something was wrong. I think when we went on our family vacation, I could kind of see her
2:29
walk in her gate. I was like, it looks a little off. We really then just put Lauren kind of through
2:35
the gauntlet for the next four months going from doctor to doctor to doctor trying to figure out
2:41
what all this was. I remember vividly the balance test. I was like, I feel like all the tests they're
2:48
doing to her and she's struggling with, I'm struggling with too. She did the balance test
2:55
where she closed her eyes and she fell over and I'm watching her do that and I closed my eyes and
3:01
I kind of started swaying. They took my blood. My test results came back two weeks later. I was numb
3:08
I did not want to believe it. I didn't want anyone to talk to me about it. I was totally freaked out
3:16
My disease is progressive, so what I can do now, I won't be able to do in two years, four years
3:23
It is hard to stay positive when it is such a hard diagnosis. We try to continue encouraging
3:29
you guys to live your dreams. They changed a little. The diagnosis was definitely hard on my
3:35
parents because no parent wants to hear that their two daughters both have a rare disease
3:43
that's for aggressive. They don't really show that they're upset or struggling, but I'll catch them
3:48
maybe being upset on their own and they'll try to act okay and strong for me, but I know it has to
3:55
be really hard. You guys, you know, are now holding down careers and doing awesome, just pushing
4:02
through this and saying we're not going to let this defeat us. And there we go
4:08
It is terrifying knowing that I am going to lose functions in the future
4:16
I honestly try not to think about it, but when I do, I try to turn that fear into working
4:26
out and fighting it. Keep those elbows straight. Physical therapy now is a way to kind of work out my stress and my anger
4:37
It's a stressful labor, and I feel really accomplished when I finish a physical therapy session
4:44
It's difficult to watch, but we know it's necessary, and we know where we're at
4:48
and we just got to keep pushing forward. All right. Here's my day in the life of living with Friedrich's ataxia
4:58
What are some of the native assumptions people have made about your condition? People think I'm drunk. There have been instances where people are mean, like bouncers, and they're
5:08
like, I don't care, you're making it up. I have spoke on TikTok about this topic, and it was crazy
5:16
to me how many people there are that do not care about people who have disabilities. Like, they're
5:23
like, if you have a disability, you shouldn't be out drinking. I am a human. I do deserve to go out
5:29
and have fun and have social interactions. But it does really get to me because I'm like
5:35
they don't know me, they don't know my story. Like, how dare they? I want anyone with a rare disease to know
5:41
that you are not alone. Hello. How are you? I'm good, I missed you
5:49
Come on in. Today my friend Madison is coming up. She knew me before diagnosis and after diagnosis
5:59
She has been the greatest support. Do you remember when the day I got diagnosed and I called you
6:07
Do you remember that conversation? I do. It was so sad. I was so sad
6:11
I cried a lot. I cried a lot that day. I thought I would be that 40-year-old mom who could still do a backflip on command
6:21
If you would have asked me, I would have bet on it as well. Yeah
6:25
Growing up, I was a varsity cheerleader. I was the girl who would get thrown in the air and I'd be on one leg, they'd throw me up and catch me on the other leg
6:33
How does it feel just looking at these now? I don't know, it kind of makes me sad
6:39
Is it? Yeah, it does. Some of your pictures too. I love that picture
6:44
Is it hard that you know that you can't do stuff like that now considering you were an athlete your whole life
6:51
Yeah, I feel like I have this crazy skill and that got taken away from me
6:59
I miss being able to dance. I wish I could still dance and I've lost that ability
7:07
She wants to have fun. She wants to dance. She wants to have all these experiences
7:17
And she can't. And for me to see that is hard. I wish I could just pick her up and take her out there and dance with her Like I always have to remind myself it okay You okay Everything fine It was all about the fun the friendships
7:36
And you can never take that stuff away. You're right. Nobody can ever take those from you
7:42
You'll have those forever, those memories, for sure. And we wouldn't have been so close
7:47
We didn't cheer together all these years. I love you. I am hoping in the future there is going to be a cure and I'll never lose my walking
7:58
But even if I do, I just really hope in the future that I'll have a family someday and still do the things that make me happy
8:08
We love fishing. This was actually our first day ever. My boyfriend knew that I had F.A. when I first met him
8:16
In the past, guys have been totally freaked out by F.A. and their families
8:20
and they were like, you don't want to date a girl who's going to be in a wheelchair. When we first met and I first told you about F.A., what was your initial reaction
8:31
At first I had no clue what it was, but I did a little bit of research
8:35
and it doesn't have no issue with it for me. And it's scary at all
8:41
No, it's not really, no. He is very understanding. He knows that I do get a lot more tired than he does, and he will step it up and help me when need be
8:51
I've had a few people ask if I'm comfortable to be there to support you
8:56
and that's totally something I'm willing to be here for, and I'm thankful to have you with me
9:03
I hope that people know that if they have a disability or they're newly diagnosed with a health condition
9:09
that it's not going to stop you from finding love and living your life to the fullest
9:17
You can find adaptions to do the things that you love to do
9:21
My perspective on life, I am grateful for, and I wouldn't have had that if I was not diagnosed with redriced ataxia
9:29
because I like to live my life to the fullest. I like to be happy, and I just try not to let the little things get me down in life
9:39
so this is my c-pap machine that i use when i am sleeping the muscular dystrophy affects my lungs
9:52
and during the night when i'm sleeping i stop breathing so this stops that from happening
9:58
my condition is muscular dystrophy and scoliosis my muscular dystrophy is luchenne and it mainly
10:05
occurs in males. It's very rare in females, like one in 50 million. I've never met anyone else with
10:13
my condition in a female. There is no cure for the condition that I have, and it is slowly
10:20
progressive over time. So these are the medicines that I take daily. Muscular dystrophy affects a
10:27
lot of things in my body, so I depend on medicine, you know, to live every day. There were no signs
10:34
at all of the Duchenne's muscular dystrophy when I was born. My mother didn't realize anything until
10:41
I was around two. I was constantly falling down when I was walking and I wasn't catching myself
10:48
so she ended up contacting the doctor about it. They did inform my parents that I wouldn't make
10:54
it past seven years old. So the thing on my head is called a halo and it is for my scoliosis. It's
11:03
trying to straighten it out as much as possible with the traction, which is what I'm being pulled
11:10
with. Scoliosis is a disease that affects your spine. My spine is curved into a S and it is
11:18
all leaning on my right side. So it's compressing my right lung, like as if someone's pushing on it
11:26
I have had this halo for 15 years so far. I got it when I was 11. It was surgically placed and the
11:34
screws are like screwed into the skin pushed against the skull. I am not able to have scoliosis
11:42
surgery due to my muscular dystrophy. So my halo is permanent and I'll have it for the rest of my
11:47
life. I do not feel the halo like any pain from the halo but I do feel the tension against my spine
11:54
So it's just a stretch, basically. Growing up with a halo, it most definitely made me feel very different from other people
12:04
I was very self-conscious about my halo and what people were going to say or kids were going to say
12:10
Now when I see myself in the mirror, I've learned to accept me for me
12:15
Maybe around 21, I finally came to terms with, you know, this is how it's going to be
12:21
and one day it will get worse, but we're gonna live on until that day comes. Hello
12:27
Sleep good? Yeah. You ready for breakfast? Let me put you in your walker, okay
12:33
I need help from basically anyone around. My mother is my support throughout every day
12:41
So the walker is to help with moving my legs and getting me out of the chair from the sitting
12:48
so I could stretch and stuff. And I like to use the walker to eat at the table. More? Yeah. There. There
12:58
I have leaned on my family a lot. It's been tough, it's been a journey
13:03
I don't think I could live without my family or be the person that I am without them
13:08
Ooh, ready yet? Hey! Hey! How you doing? All right, all right
13:12
All right, you ready to eat? Yes, I am. Hey, baby. How you doing? Hey
13:18
Thank you. OK. When they told me she would live past seven
13:22
it just hit me very hard. It took everything in to keep on going
13:27
And then when they actually put the halo on, we had to stay there for three months at the hospital
13:35
And for me, it was very stressful because you know how you don't want your children to be in no pain
13:40
It was a pretty risky surgery, so we were all kind of on edge about it
13:46
But we knew it had to be done. Her back was curved pretty good
13:50
At the time, you know, we were stressed out, but it worked out for her, and that's the blessing that we did have
13:54
So, sitting here with her today, so. I could tell it bothered her at times, you know, people staring all the time
14:02
when we'd go to places. But I think she motivates herself. She's a strong young lady, and she likes to live
14:11
Over the time, she's been grew to understand and see that life is what it is
14:15
and she's enjoying it and living to her best and doing what she likes to do
14:20
She's definitely the strongest person I know. What she's been to my children, even with her condition
14:25
she's been the best aunt that you could ask for, literally. Has the biggest will to thrive and keep living
14:33
She could be an inspiration to others, show them that you still live life to the fullest
14:38
regardless of what condition is. I started posting about a year ago
14:44
I've always wanted to just inspire one person. Like I used to tell myself, if I can inspire one person, like my life is complete
14:52
Like it's my goal. I was terrified of the backlash and everything or what people would say Hey how are you Good how are you doing
15:06
It's been a while. My friend Brianna, she's seen it all and she's gave me the confidence to continue doing what I'm doing and enjoying myself
15:14
I have an idea. We should go live and say hi to the fans and everything
15:19
Yeah, we can do that. See who comes on. I knew she had been on TikTok for a little while. Being on that platform has its ups and downs
15:29
Someone said, sad she can't stand up for herself. This looks like an execution. Does she want to play Hangman
15:37
And then there was one time I said, goddammit, nobody want to see this. Why is it on my feed
15:45
So we get stuff like that. When people are leaving those mean comments on her TikTok, it makes me very angry
15:54
It's just a bunch of haters around the world. I don't like it at all
15:58
A message that I have for people that have judgment is you can never make me hate my life
16:04
You can never make me hate myself. And you give me the energy that I need to keep going
16:11
I'm just glad that she's finally getting it out and telling everybody like, hey, this is this is me
16:16
accept me for me and she's making a difference. Proud of her. I am glad to be born different
16:23
because it makes me unique and it makes me who I am. Being different is okay. There's nothing wrong
16:29
with it. I get asked that question, if I could change my life or something about me, would I
16:35
And I honestly can answer that and say no because I was put on this earth this way for a reason
16:41
I have a great life at the end of the day and I'm blessed and I really don't think I would change
16:46
anything. It's not easy, but I promise to never give up. Always remember, it's just a bad day
16:52
not a bad life. I'm about to call all my friends. Oh, Lord, have mercy. Hopefully it works
17:05
I'm Alexandra. I'm 27 years old, and I have Williams syndrome. I'm Victoria. I'm 30 years
17:11
old. I'm this one's sister. Williams Syndrome is a condition kind of like Down Syndrome
17:19
but we're missing chromosome 7. It's characterized by cognitive and developmental issues. Along with
17:28
the developmental delays, they also have very highly social personalities. Hi, I'm Alexandra
17:35
I have Williams Syndrome. They all have an affinity for music. Do you know Nickelback? I do
17:40
Love that band. They have similar facial features, and y'all have a wider mouth
17:48
and then y'all usually all have, like, the starburst blue eyes. A lot of y'all do
17:53
Oh, yeah, if you came close to my eyes, you would see it. Hi
17:58
I talked to my friends that have the same Williams Syndrome. She's made Williams Syndrome friends from all over the world
18:08
They Facebook Messenger all the time. Like all the time. I'll be like sewing and I'll look over and some of them are sleeping and they're like watching each other sleep
18:20
Some of them are like dancing and doing their own thing. We're really crazy
18:24
What do y'all ask me to do to Alexandra when y'all are on the phone? Oh, no, no, no, no, no. I know where this is going. Don't
18:31
Huh? And to go home. It doesn't feel tiring to match her happy energy
18:40
She's always been that way. It's always been a consistent in my life
18:44
Me and my sister spent every day together. I love hanging out with her
18:49
We are going to the thrift store to find new items so we can create something really cool today
18:58
Put your shoes on, girl. Sometimes we argue. I mean, we're sisters
19:03
That's what sisters do. She's a precious sister. That's why. Where's your jacket
19:08
Throw me mine. Thank you. Totally threw it, so I threw it
19:16
You did. You did threw it. My parents were always very open and honest about her disability
19:26
Our mom, she took her out of school, and she got homeschooled where she could have the one-on-one attention that she actually needed
19:32
It was kind of in that point where kids aren't so as accepting
19:38
when they kind of get to that age where they start forming friend groups and oh she's a little
19:42
different that's something I really I don't think she would have been able to handle but she didn't
19:48
have to go through that you know are you happy are you happy about that oh yeah
19:53
oh this is not as cute as I thought it was She has so many cute clothes. It's ridiculous
20:06
I love clothes. They're so pretty. Well, we like fun, happy, like funky clothes
20:14
It's kind of hard to find, so we just make our own. It's like treasure hunting. We like treasure hunting
20:21
And then we like creating, so we treasure hunt and create all at the same time
20:27
That's funky. I get excited immediately. She goes like this. She got blue nails
20:39
Thank you. Yeah, if I know them well enough. Yeah, but back when you were younger, it wasn't if you knew them well enough
20:50
I used to love hugging people that I didn't know because it made me happy
20:55
She would, so she would wander off and just give anybody a hug, which is sweet
21:00
And most people don't mind, but, you know, some people do mind
21:04
Not everyone is friendly. Not everyone has good intentions. It took a while for you to understand that
21:11
Victoria taught me not to. I worry people will take advantage of her, but I will always be there to protect my sister
21:19
In the car. Good job. So the mottos that are on our clothes, we try to use phrases that are like be yourself, stay weird, normal is boring
21:32
You know, if you're weird, that's fine. Like embrace how you're unique. I love that one
21:36
You like this one of you? Yeah. Yeah. It says normal is boring and it has the Williams Syndrome logo on there as well
21:44
So any of our items, like t-shirts wise, that we make that has the Williams Syndrome logo
21:49
we donate a portion of our profits to the association. These colors match together
21:55
You like those colors together? So I do the sewing because I enjoy it and she like has no interest in sewing
22:04
But she helps. You want to cut it? When she cuts, it's a little jagged, but I like that
22:09
It just adds some uniqueness to it. she likes to I mean have the final say so on the designs to make sure that they're Alexander
22:19
approved so all of the designs have been Alexander approved before they go on the website
22:24
and I get something and I say what do you think about this and she be like no that ugly And so I try again until I be honest with you I will tell her how it is
22:35
This one's one of my favorites because it has me on it. You cut off the bottom to this to make it like frayed and worn looking
22:45
And who models the clothes when they're done? Oh, okay. Hey! Walk towards me with your model walk and runway go
23:00
And then strike your pose. Good job. Alexander, how do you feel when you're modeling
23:07
I feel good. She's the best model. Oh, oh, I look good
23:14
Which one, you think? Oh, that one's cute. You like that one
23:17
Yeah. I like that one. and we make videos for what do we make videos for? TikTok or Instagram. Are you ready? Yeah
23:28
I feel like I have tried to create platforms to where it is positive and there is love. Everyone
23:35
gets trolls and it would really irk me when they would make comments on my sister. That was part
23:43
of the reason why I was hesitant in the beginning to even put her on social media. I mean there are
23:47
things that could get her down but she chooses not to so it makes me proud. Just
23:54
the way that she loves and cares about people is a good reminder for me to just
24:00
see the world from her point of view because I think our world especially
24:07
nowadays just needs a lot more of that. Why are you proud of me
24:11
Because you have been there for me since I was four. I'm always going to be there for you
24:21
That's what sisters are for. Huh? You should be happy with what makes you unique
24:29
Because normal is like really boring. Yeah. Yeah. So I start my morning on this PEMF mat every day
24:42
It is a pulse electromagnetic frequency mat. And basically what that does is like penetrates your body with infrared heat, helps decrease inflammation
24:52
That will help anybody with like an autoimmune disease or chronic illness, chronic pain, kind of have a little bit of relief
24:58
I have six chronic illnesses. For all of my conditions, there's no cure
25:03
The rarest one that I have though is PAN. That one's been difficult to deal with
25:07
PAN is the acronym for polyarteritis nodosa. It is a degenerative form of vasculitis that impacts your small and medium-sized blood vessels
25:15
causes your organ systems to slowly fail because your veins get so swollen
25:20
I was super lucky and I got diagnosed early in my whole journey with PAN
25:25
The PAN had impacted my nerves and that injury caused me to develop CRPS or complex regional pain syndrome
25:32
CRPS is a serious pain condition. I'd say my pain's at like a five and a half right now
25:38
Thank you so much. I wake up some days and my pain is a 10 and usually that's a let's call my doctors and
25:44
see if I need to go to the hospital but if I can get through it at home that's ideal
25:49
it's no fun going to the hospital. On really bad weeks I'm crying when I wake up
25:54
Our body literally feels like it's on fire. It's hard to treat it's hard to control and when it is
25:58
active it's unbearable. How are you doing? How are you feeling this morning? It's like a five when I
26:04
I woke up, but I feel like it's like a six right now. I need to get something in my stomach so I can have meds
26:09
My husband and I met when we were 19. I know that I'm able to live a normal-er life
26:15
because of Cooper. Every morning when I wake up, he's out in the kitchen
26:19
making me my smoothie, organizing my pills, and just making sure that he is enabling me
26:24
to have a good start to my day. He wants me to conserve my spoons and energy
26:28
so that we can use those for something fun together. He unlocks life for me
26:32
This will be the only thing that we really have until lunch, just because she usually doesn't feel good, she doesn't like to eat, and the meds kind of upset her stomach, so this is just the base layer
26:43
Breakfast of champions, and I think that's it for this morning, but we have a lot more to get through on this day
26:51
It was January of my junior year that my health took a nosedive
26:55
Cooper and I were going out to dinner or something, and I remember looking at him as we were getting ready
27:00
and I just said, I am in so much pain right now. Like, I can't go out to dinner, and instead we went to the emergency room
27:06
And then I got sicker. By 2018, 2019, I was really, really sick
27:13
Couldn't get out of bed. Ended up quitting my job. You were having these crazy pain flare-ups where you were just like..
27:20
Passing out, having seizures. Yeah, you were so dramatic. Like, that was really scary to not know what I could do to help you
27:28
When I got that call that I was having PAN, it was a, hey, you have a disease
27:34
There's no cure for it. It only gets worse from here. And it felt like my heart fell out of my body
27:40
The first rheumatologist I saw about it, they told me I had four months to live. So that then scared the out of me
27:46
Is this going to ruin my life? Am I going to die? Am I going to have to change everything about myself and how I live
27:52
On the really bad pain days, it is life-stopping. That's when my body's on fire
27:58
It feels like there's fire ants crawling up my legs, biting me
28:02
that I have my hand over a hot flame or touching a cast iron that's on
28:09
It's debilitating. Cooper takes on way more tasks. If I switch into a bad day or if I start with a bad day
28:15
he goes into full caregiver mode. I think the hardest part of living with chronic pain
28:19
is that sometimes you just don't feel safe in your own body, and that's a very weird sensation to experience
28:26
It doesn't matter how many different things you do, you're not in the driver's seat
28:30
I am still not feeling good. I'm a little worried we might need to call Julie today
28:35
All right, let's do it. No matter how sick I am right now
28:38
it could always get worse, and that scares the shit out of me. I'm always on high alert
28:42
If it starts to roll, it gets bad fast, and when it does, I call my nurse
28:46
She's on speed dial. She just drops what she's doing, and she comes here. Hi, Julie. Hi, Alex
28:52
Oh, your blood pressure's good today. Honestly surprised. I thought it would be not good
28:59
When I get IV hydration infusions, it's usually when I'm having really high symptoms
29:04
I'm calling her saying, hey, I just talked to my doctors and they want me to go to the ER
29:08
but I really don't want to. Can we try to do an IV hydration at home? And if that works, then I can avoid the ER and everyone's happier
29:14
Sometimes it kicks in in a couple of hours, but a lot of times my patients feel it right away
29:20
Keeps me out of the ER. Keeps her out of the emergency room. First I was just a content creator and then I started dabbling in the influencer scene a little bit
29:29
Save your spoons and pace yourself kind of thing. I think it's really important to document my condition when I'm not feeling well and when I'm feeling well
29:37
Because I really want people to see what a life with chronic illness looks like in its entirety
29:42
When I looked around online, it was a lot of educational content creators
29:46
What I didn't see was somebody sharing their full life, the good days too, but also like how bad the bad days were
29:52
and to show how wide of a life we live having chronic illnesses
29:57
I think when a condition isn't visible, it's so easy Jump to conclusions that somebody is faking it, that they're exaggerating, that their flare-ups are for attention
30:07
Every now and then I get the occasional keyboard meanie. The big ones that percolate to the top are like, you can't be in that much pain
30:16
You look normal or like you look happy or you look pretty or whatever. And the fact is like pain doesn't look a certain way
30:23
I'll be honest, like some days are really hard to find positivity. I find that when I'm having low moments, I lean on Cooper a lot
30:31
I lean on my family a lot. Will you get my computer? I want to FaceTime my dad. This is the perk of having a dad as a doctor
30:37
Hi, Dad. Hey, how are you guys? Coop, Alex? Feeling a little bit run down because of this IBIG stuff, but it's okay
30:46
It happens. My dad is the surgeon-in-chief at IUPUI. Having a parent that is in the medicine field when you have such complex, rare diseases is so comforting and like honestly one of the best blessings
31:01
You're unique, as you know, right? You've got a bunch of different things going on, so it's not simple
31:06
I remember crying at a coffee shop with my dad saying, I don't think I'm going to get better
31:10
I'm only going to get worse from here. Why should I even keep trying? My dad just looked at me and said, medicine keeps evolving, honey
31:17
Like, you got to hold hope. Sit with it. Be with your family. we're going to get you through this. And honestly, that was the words I needed to hear at that time
31:25
You just got to keep checking off until you get to the exact right place and then just stick with
31:31
it. I mean, just listen to you over the last 30 some years as you've kind of battled through all
31:36
this stuff. Thanks, dad. Good mama squeeze for us. Yeah. I love you, DC. Thanks. Get some rest
31:42
recovery. Okay. Sounds good. I think I want people to walk away after hearing my story
31:48
I know that hope can exist in any situation. I feel very hopeful, and I think that has to do with the fact that I have accepted that I have a chronic illness
31:58
that my life does look different than other people, that I am worthy of getting care and feeling okay and good by whatever means that takes
32:07
and that if I have an unconventional body, I can and get to live an unconventional life
32:12
I truly think that every experience that we have in life is for a reason
32:18
when I look back at being born sick and getting sicker as an adult
32:25
if it's led me to here I don't think I would change it having a chronic illness doesn't mean your life is over
32:30
I think it's like being grateful choosing to look at the good side of things
32:35
or like still finding the good out of things and just being unapologetically yourself as you deal with it all
32:41
Mogeous Syndrome affects my day-to-day life because human interactions are something that's
32:51
extremely difficult for me. When I try to snob with Mogeous Syndrome, only one time my case
32:57
moves like this. So this one moves right here, but this other side is just completely dead
33:03
no matter what I do. So this moves, but this one doesn't. My name is Chris, and I have a
33:08
condition called Möbius syndrome. It's a disability that attacks the 6th and 7th
33:12
cranial facial nerve so I can't make facial expressions, I can't look my eyes
33:16
side to side. I've never been able to smile basically not in an entire life. I can feel
33:21
smiling but when I look in the mirror I can't see myself actually smiling. When I looked at myself in the mirror growing up it was just a constant
33:30
gain of questioning why I was the way I was. Growing up with Möbius syndrome was definitely
33:35
really hard upbringing because a lot of kids didn't really understand. I just dealt with a lot of
33:40
harassment, people, you know, seeing me as an outcast, an alien, I'll get kicked on a lot
33:47
They'll call me like fish boy, anything relating to like an animal that has like big licks
33:52
jungle man. High school was kind of a really bad period for me because I had like no friends at
33:57
all. There'll be days where I'll just talk to my parents and that's it. How are you? I'm good
34:02
How much did he? Good. Same day at Shepherd. When Christopher used to speak, even us as parents
34:10
we were just able to get like only 50%. The rest of the other 50% he had to figure out
34:18
It was hard for him to come out of his shell. He likes to stay in his little corner
34:26
Christopher confidence was like a long journey I learned at 16 that there is a procedure where you could take either a muscle from your limb or another part of your body and insert it around your jaw
34:39
to kind of construct a, you know, artificial style. The surgery would cost $300,000 at the time and, you know, that's a lot of money
34:47
So I was like, hey, I need to figure out how I can do this. I tried every, you know, ethical way I could just make money online
34:54
And I just kept working and working and working. It may be hard to believe, but right now
34:59
the business is actually doing $50,000 a month in revenue and around $25,000 a month in profit
35:10
Since Christopher built his business, wow. That's like a big change. Now I see a young man, totally confident
35:22
like talking with strangers, like from zero. $200. When I actually started making money
35:34
it kind of really changed my thought on the surgery as a whole
35:37
That's when I really started to realize, like, hey, I'm not supposed to complain over things I cannot control
35:43
And that's what put me in the mindset to kind of just start my journey of acceptance
35:48
This is my biggest day ever. We made $8,100 in a single day, which is crazy
35:56
And then this was my second biggest day in an hour, made $25
36:01
And I realized that it wasn't necessarily the disability in growing my success and making me have mental health issues
36:08
It was the way I felt about myself. So my business kind of forced me to take my life a bit more serious and change my day-to-day actions, which led me to actually being successful
36:18
Yo, Tony. Yo. Can you help me record a test? I got you, bro
36:22
With the business I do, a lot of people were telling me, you can't do this unless you show your face
36:28
In 2020, I started posting on TikTok. I didn't take matters into my own hand and decided to change my life
36:34
Who knows what I would be? I was pretty nervous when I started showing my face on TikTok because I didn't know how people would react for the longest
36:40
I just wanted to stay completely anonymous. At first, he was kind of showing his face, side profile
36:45
I had to tell him, bro, you look normal. You really look normal to me
36:49
If you post, you'll get more interactions with people and it'll just feel like more organic and go
36:56
This business model is something that's untaxed and is the number one best way to quit your job in 2024
37:02
From the legit first post, people started sorting in. They're like, whoa, what is going on here
37:07
Like people think I'm a computer generated AI, like a soulless being or something
37:12
I don't know. Yeah, it's the comments are kind of funny. This guy kind of did
37:19
God just be making anything these days. Somebody put an alien emoji
37:24
Someone said a face not even a mother can love, which is pretty harsh. But again, I like her, you know
37:30
it's kind of like dark humor. You know what they say, though. If you don't got haters, you're not doing anything right. Exactly
37:36
When we first started seeing those comments, we obviously hated it at first
37:40
I hated it for Chris because people were really saying some bad things on the internet
37:46
But after time we realized that we could just beat this with humor
37:51
Personally, I laugh. I think those comments sometimes. I think it's actually extremely hilarious and it has zero effect on me at all
37:57
You said you look like a dry sea A dry sea . I never heard that one before. Oh my god
38:09
My achievements in business have really changed how I feel about myself in general
38:16
To me, it's not really about the money. It's just about having the freedom and being able to just do what I want to do
38:23
When I actually was able to buy a Nigerian car, I thought it was really good. It was like an unbelievable feeling
38:30
When it came out, it was roughly worth around $80,000. So I'm pretty lucky to drive a car like that, kind of my age
38:36
Like, sometimes I go to grocery stores, I get out, people are like, what the? You know, cause they don't really expect me
38:41
to get out that car. I don't want to achieve a goal in a maze scene unattainable to me now
38:46
I always reflect to where I was back then. And it really puts me in a position to realize
38:52
that I'm capable of doing great things and everyone else is as well
38:56
I'm super proud of myself for just actually getting to that point of digging myself out of the mud
39:02
because in the beginning I could never really see myself and truly getting out of this I am so proud of Christopher so proud He knows what he wants he has like a goal he stays like focused
39:18
And he's a hard worker, baby, hard worker. The way I've seen Chris change as a person, he became like a better big brother, you know
39:26
He tries to motivate me every day to get on top of my stuff
39:30
and he's very positive now. I see young men with resilience, ready to fight, and overcoming his disability
39:44
And I think all parents will be proud to have a son like Christopher
39:48
Any young entrepreneur living with a rare condition, I just want them to know that anything is possible
39:54
as cliche as it sounds, I literally had nothing. I was just a normal kid that would get made fun of
39:59
every single day, really had nothing going for me, but I just changed the actions around me
40:04
and that led me to success. This peak showing up every single day as much as you can
40:09
and you will see change. We have a hard time especially growing up
40:18
because I didn't know how other people were in it treat me
40:22
and I was nervous about how I look. I have a rare condition called Natless
40:28
It's actually a super rare condition. There was a study back in 2018 that showed that only 13 people had this condition
40:38
At least it's a face mask syndrome. So for my case, it made my eyes very tiny
40:44
I cannot straighten all my fingers all the way. I can only straighten out these two fingers
40:49
And it also affected my throat. So that's why I found this way
40:54
I had a really hard time with how people couldn't understand me
40:58
That's one of the things that kind of frustrated me when I was growing up
41:03
Morning, Mom. Morning. How old were you when you were diagnosed with this syndrome
41:09
Around the time I was in elementary school. I was rough, you know, I wasn't treated like other kids
41:15
So it kind of made me feel like, yeah, I'm kind of different from everybody
41:20
I had a lot of kids making fun of me because they don't usually see someone who looks like me all the time
41:27
Then as I got older, I realized, hey, like, this is how the world's going to be
41:31
I can't really think how other people think about how I am. My parents helped me a lot emotionally, especially through all my surgeries
41:40
I had a couple surgeries when I was younger. They actually tried to do surgery on my eye, but they couldn't open it
41:48
And then I had another surgery on my throat, which is my palate, because no one could understand
41:54
When he was born, we didn't know anything. We didn't know how long he's going to live or what kind of life he has to go through
42:05
I have no idea. He had to go through so many surgeries
42:11
I was like really heartbroken. At the beginning, he was left, and I was like, yeah, why is all this happening to me
42:20
but as I learned a lot, the way this is going to be like the learning blocks
42:25
This is who I'm going to be. I'm going to use this one day to inspire people
42:31
Unfortunately, sometimes people look at him or how he looks like. I saw a lot of time he has struggled
42:41
He fights with those situations. I'm so proud of him that he never really complained
42:49
Complain? I think his mind from the beginning born strong. How important was it having your mom there for you
43:22
through everything? Oh yeah, it was super important that she'd be there
43:26
You know, cause who else am I gonna go through it with? Thank you, mom
43:31
Of course. My three surgeries weren 100 successful so today I gonna go go see my doctor I might ask him hey maybe have another throat surgery what you do
43:49
Or another mouth surgery where I can open my jaw a little bit more
43:54
What about your eye? Yeah, I might ask him about that too
43:58
I'm hoping there will be options for me so I can speak and see easier
44:02
Hey, buddy. Long time no see. Good to see you. Yeah, good to see you. It's been a while. You're 21 now
44:13
Yeah. I was there from your first minute of being alive. Isn't that crazy? Why don't you hop on up
44:19
and let's get started? Sure. All right. So how's everything going? Health-wise, are we doing okay
44:24
Yeah, everything's been doing a lot. I've been doing a lot of work now. I've been exercising a lot
44:30
It looks like it. Yeah, you're looking good. But you've had a long road, right
44:35
You've had to see a bunch of other doctors and a bunch of other specialists
44:39
You've had some surgeries too, right? Yeah, they were not so successful
44:44
So I'm hoping in the future it's going to be a surgery or something that we can do to fix that, you know
44:51
Yeah, yeah. Well, you know, your condition is so rare that I think a lot of this we're sort of learning as we go
45:00
And I think even for the specialists, none of them have had to deal with a case like this
45:05
So a lot of it is sort of new and experimental. Luckily, there's a lot of smart people out there doing research on this now
45:12
So, you know, hopefully we'll have some solutions, you know, coming out
45:16
Yeah. But you know, you know, the amazing thing about you, buddy, you've got a great sense of humor about the whole thing
45:22
And that's how you've been from when you were young. And that's why I've just enjoyed seeing you here in the office
45:27
I'm grateful. No, no, I'm grateful. I learned a lot. I consider myself lucky to have met you and to have learned about this condition
45:38
Because again, there's not many doctors in this world that know about this condition
45:42
Keep in touch. I'm always here for you. Good to see you. Good to see you, too, Doc
45:47
You take care. Yeah, thank you. If you're currently dealing with any type of low-surface food or insecurity, I'm looking
45:56
So I started making Instagram videos back in 2024. And all my friends were like, hey, you're really good at giving advice
46:04
You're good at giving inspiration to others. So why don't you start content creation
46:09
And then I just started going out the line from there. And it blew up pretty quickly, actually
46:15
Within just a few weeks, I had like 10,000 followers. I got a lot of comments on my team
46:21
People calling me different things. Like, I get this one coming a lot, the engine final boss
46:27
And this buddy kind of makes me happy a little bit because of, like
46:31
I really do look like an engine final boss. Buddy's an awesome person, awesome soul
46:39
The most impressive, I would say, is just his ability to just take whatever challenge
46:43
and just go into it full steam ahead. How's it make you feel, buddy
46:47
You're just real great. How's that, man? Yeah. Good, yeah. All the way in? Yep
46:54
Everybody's gonna play a lot of different games, you know. One, two, three
47:02
And the way I kind of learned is that you can do two things
47:06
You can do anything, or you can kind of shame it off
47:10
and be like, yeah, okay, you got your shame very much. Once you look at him, it kind of makes you go inside yourself
47:17
and kind of understand, like, none of us really have excuses. I was in awe from day one and he earned my respect instantly
47:26
The way I'm approaching right now is not merely a sense of pride or kindness, but more like I'm grateful
47:33
I'm grateful to have my career. I'm grateful to have my people around me
47:38
I'm grateful for everything that I've been put through. Challenges, obstacles, opportunities, whatever. I'm grateful
47:45
Whatever makes you different, it brings you. Because that makes you who you are
47:51
That's what's gonna make you special. One final message I'd say, the universe is great, your life is great
47:58
and you are great. Thank you