- 7 weeks ago
00:00 - Introduction
01:11 - Tina & Living Without A Nose
06:03 - Tayla & Moebius Syndrome
11:01 - Gavin & Lymphatic Malformation
16:20 - Katelyn & Pierre Robin Syndrome
21:32 - Kira & Port Wine Birthmark
27:36 - Autumn & Neurofibromatosis Type 1
32:28 - Buddy & Nablus
01:11 - Tina & Living Without A Nose
06:03 - Tayla & Moebius Syndrome
11:01 - Gavin & Lymphatic Malformation
16:20 - Katelyn & Pierre Robin Syndrome
21:32 - Kira & Port Wine Birthmark
27:36 - Autumn & Neurofibromatosis Type 1
32:28 - Buddy & Nablus
Category
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FunTranscript
00:00I lost my nose to cancer. People say, well, how are you so confident? Because I fought
00:05dang hard and I'm alive. I can't smile. I was born with a really rare neurological
00:11disorder called Muglia syndrome and the syndrome is so rare that it only affects
00:15one individual in every three to four million. Gavin's a special little boy. He has a rare
00:19medical condition called lymphatic malformation. When people stare at Gavin
00:23in public, I think they want to ask what's wrong with him, but they just don't know how.
00:29Katelyn's challenge isn't her actual disability itself. It's more of the way so
00:35many people view her. I was told that my birthmark reminded someone of a dead
00:40fetus. I stopped covering with makeup. I just finally said enough was enough.
00:46Autumn has a large tumor on the right side of her face. We've had people call her
00:52the Hunchback of Notre Dame or like the Elephant Man.
00:54All these 13 people in the world have my rare condition to make me look like I'm wearing a mask.
01:02Yay! I'm going to go see my doctor. I'm hoping there will be options for me.
01:06None of them have had to deal with a case like this.
01:13I was diagnosed with stage 2 nasal cancer in May of 2014 when I found out I was devastated.
01:23Just terrified. They wanted me to have radiation. The risks were quite profound. There was a great
01:32risk to my eyesight, risk to my brain, my saliva glands. I could have ended up on a feeding tube
01:39for
01:39the rest of my life. There's got to be another way. My best chance to be cancer-free is to
01:45have the
01:45full rhinectomy. The doctor said you're a young attractive woman. We don't want to permanently
01:50disfigure you. I told him I appreciate that but what good is pretty if I'm not here anymore.
01:56I made the decision just cut it off. I can remember holding my children before the final surgery and
02:05just breathing them in because I didn't know if I would be able to smell them ever again.
02:13I can remember the last time I was able to put my nose to warm it in the nape of
02:19my husband's neck.
02:21You hold on to what you can, especially when you're facing something like your mortality.
02:28After the complete rhinectomy, I was worried how people would react to me, particularly children,
02:37particularly my children. The first time our youngest son saw me without the gauze,
02:43he turned bright red and started trembling. And he said, oh my goodness, mommy,
02:48what happened to your nose? You need to go see Dr. Connor right now. Dr. Connor is his pediatrician.
02:55When he said that, laughter through tears. I'm sorry. I do put up a brave face and I do feel
03:04strong and I do feel brave, but I've had to fight for that. People say, well, how are you so
03:10confident?
03:11Because I fought dang hard and I'm alive. Nothing's more beautiful than alive.
03:19I'm pretty excited today. I'm going to meet my daughter Christina out for lunch.
03:26Hey, are you ready to go? I am. Let me grab my jacket and my purse.
03:30We're out the door. Alrighty. Can I have kisses? Bye.
03:39The first time I saw my mom without her nose, I could tell by the way that she was looking
03:44at me,
03:45that she expected me to have that wow factor. That, oh my gosh, she looks so different.
03:52She's my mother. I was just thankful to still have her here.
03:56I love you so much. I love you too.
03:57When I first lost my nose, I noticed that the stares really, really bothered my family members.
04:04So what I told the kids was, well, honey, they're staring because they're trying to figure out how
04:08I still look this good and I don't even have a nose on my face.
04:11My face is without a nose and anything that's different or deformed or anything of that nature
04:19is made to be scary. Society builds it that way. They had to wait to make a prosthetic until I
04:30think
04:30it was six months after to give everything time to heal. I don't know if it's that I had lived
04:37six
04:38months without it. I didn't like the way it looked. I didn't like the glue. It irritated my skin.
04:45Like I couldn't breathe when I had it on. Not physically. I couldn't emotionally breathe,
04:51but I wore it for about two years. I just don't care for it, but maybe if I could get
04:57Reese Witherspoon's
04:58nose. It could look like Reese Witherspoon. And one day I was like, I'm not doing this anymore. And I
05:05still have people that ask me, why don't you wear that prosthetic? You would be so pretty if you had
05:10a
05:11nose. I'm pretty anyway. I just stopped letting it define me. I'm proud of my mom because all the
05:20stuff she's been through, she made it through. What has that taught you? Don't listen to other
05:25people. They say mean things. I do get a lot of comments though where people are telling me how
05:32they're inspired by my bravery to put myself out there. No prosthetic. No conforming to what the
05:41world deems beautiful. I like to say a lot that society tries to fit us in a box from the
05:50moment
05:51we're born. And I want to shatter that box. I want to destroy it. I don't want anybody to ever
05:57feel like
05:58they're not beautiful. So this was the day that you were diagnosed with a condition. And it was Friday,
06:0813th February. And I was born with a really rare neurological disorder called Nogia Syndrome.
06:14So it's basically like facial paralysis. And because of the syndrome, I was also born with an
06:18outer extremity deformity. And mine was bilateral telopies or clogged feet. And around the age of,
06:26I want to say 11 or 12, I had a really invasive operation that was supposed to be able to
06:32make
06:33me smile. But it was unsuccessful. And getting the news, that was really heartbreaking on the day
06:40because you sort of thought, well, what's going to happen down the track? How will she progress?
06:45What will the teenage years be like? What will her young adult life be like? And all those sorts of
06:51things. So yeah, it was heartbreaking.
07:05I think my confidence got knocked out of me as I got older. I didn't want to go anywhere
07:10because I was insecure about myself. But when it comes to physical bullying, it's like,
07:15it's tough. So, you know, like, I was pushed down hills. I had my bag ripped off my back,
07:20had books ripped out of my bag. I would get, like, I'd be walking upstairs and people would
07:27kick my knees in from behind. You know, it was tough. Oh, of course I did. I would always look
07:32at people and be like, why can't I be them? Why can't I just be accepted like they are accepting
07:36everyone else? I first started the self-help journey around the age of 20. That doesn't mean
07:45I fully accepted myself then. But it's been four years of me really working hard in all aspects
07:53of my life to make sure I can live the best life I possibly can. When I started to own
07:58who I was and
07:59my parents and everything about myself, my whole world opened up. I sort of started getting better
08:07at the beginning of 2017. I was contacted by someone from ParaFed Auckland, which is like the
08:13Paralympic sort of body here in Auckland and asked if I wanted to give athletics a go. So I was
08:20like,
08:21sure, I won't be running anywhere, but I'll throw something. So they gave me a shot put and they said,
08:27just give it a go. So I threw it and they were like, wow, okay, you're pretty good. And then
08:32they
08:32measured it and they were like, oh, you've just broken the New Zealand record in your classification.
08:38Where I competed and got my classification to compete internationally and also became world number
08:45one in my classification by competing there, which was just incredible. Being an athlete has given me so
08:52much discipline and strength and confidence and it's really set me up and I think it really helped
08:58in terms of my recovery journey. Oh, everything's changed since accepting myself. My confidence,
09:04the way I interact with people, the way I interact with people online. Being 100% authentic to me,
09:10like I'm probably one of the most sarcastic people you'll ever meet. Gosh, I know. It is so hard
09:23being ridiculously offensively attractive. Like I get it. I'm so sorry. And to be able to showcase that,
09:31especially on platforms like TikTok, like people just love it. I just don't care what anyone has to say
09:38and just go with the flow and accepting myself for who I am was the greatest decision I ever made
09:46and
09:46it just keeps getting better and better and better. So I have recently become an ambassador for an
09:53organisation called The Good Human Factory, started by professional surfer Cooper Chapman. His main goal
09:59with The Good Human Factory is to just make people curious about mental health. I joined it because
10:08I believe in Cooper's messaging so much. I myself am such a huge mental health advocate.
10:15She's got this intelligence there that is very underestimated and yeah, Mum and Dad are very
10:21super proud of her. I found myself that I've also found my purpose. I know it sounds so cheesy,
10:27but I think it was all worth it. I'd say the main thing would be inspiring and empowering other people.
10:34I don't think I'll ever get used to that. It's something that still blows my mind today,
10:39that people can take so much from me and my story. If you'd asked me a few years ago,
10:45I would have been probably a bit annoyed or sad about it and I probably would have wanted to get
10:50another operation that was enabling me to smile. But now I'm so more than fine with it. Like,
10:57I love not being able to smile. It's my superpower.
11:08One thing everybody says when they meet Gavin is that he is the happiest
11:12kid that you'll ever meet. I mean, everything that he's gone through, you'd think that he would be
11:16somewhat down and, you know, have an attitude or, but he's always happy, always smiling, always laughing.
11:26We didn't know what this condition needed or how to treat it. It's not like any normal condition.
11:32It's super rare.
11:35Good job.
11:36Lymphatic malformation is an abnormal growth of cysts within the head, face, neck, and it could even happen
11:42in wherever there is lymphatic vessels. And it occurs in only one in every 4,000 births.
11:54So we first discovered that Gavin was going to be born different when we went to our 18-week
11:59anatomy scan. We were there to figure out if he was a boy or a girl and obviously to measure
12:04all of his
12:05limbs and heart. Crazy fro.
12:09The doctor came in. She started doing her scan and she looked at us and told us, you know,
12:14he has some sort of mass. And she said it might be what's called a cystic chichroma or lymphatic
12:18malformation. When I first found out that Gavin would be different, I was terrified. I didn't know
12:23what to think. When he was born, his mass was a lot more severe than what they expected it to
12:31be.
12:35When we saw his, we were like, damn, that's nothing like we had ever seen. And the doctors were even,
12:40I think while we had so much care, the doctors were like, that's the worst we've seen in 10 years.
12:44So that was scary in itself.
12:49I first saw him and
12:54you can see like the machines behind him, but
12:57I wasn't crying. I wasn't, you know, upset. I was, that was him. That was my baby.
13:02Yeah, take a video. Oh.
13:05Everything was worth bringing him home because as a parent,
13:09of course, you don't want to see your child going through that. But at the same time,
13:12it's just who he is. That's who he is. That's Gavin's story.
13:16Bring your baby home.
13:17Hello, big Dickie. Here we go. Oh, he'll be grumpy.
13:24Let's go.
13:25Having a child with a visible difference has taught me that life is precious. It's not always going to be
13:32the way that you think it is. For me, I don't, I don't really think that he looks different and
13:37it doesn't really bother me. I guess now we're on the other side of spectrum versus seeing somebody's
13:42child look different. I think now I'm more so like you never know their story.
13:48When people stare at Gavin in public, I don't really pay any attention to it. I've had people
13:53come up to me and ask, I think they want to ask what's wrong with him or, but they just
13:58don't know
13:58how. So they'll be like, how old is he? And he's so cute. But they just don't know how to,
14:04I guess, approach the situation. But if they just say, hey, what condition does he have?
14:13Just ask. Honestly, I'm not going to get offended. I want to raise awareness.
14:21By sharing Gavin's medical adventure on social media, it has opened so many doors for,
14:26you know, raising awareness. I've had moms contact me with their children who have
14:34lymphatic malformation and they don't know what treatment to go with or they'd ask me for advice
14:39and hopefully they didn't feel as helpless as we did when we first started out.
14:43Light, doesn't it?
14:51Victoria turned 29 a couple of days ago. It's actually your first birthday.
14:56With him home. With him home. This time last year,
14:59we were still in the hospital. So this is the first one where both of our birthdays,
15:02we were able to celebrate at home. It's good to be home. It is.
15:08It's going to go get you. She's going to get you with the picker. It's going to get you.
15:15Happy birthday to you. Happy birthday to you.
15:21Through the hard parts of the journey allowed us to learn. When he was in the hospital, I always said,
15:26we have to stay positive. I didn't want any negative energy in there. And I think that with him
15:33overcoming everything and him being so strong made me that way. And a lot of people reached out to
15:38me through his Instagram page. They're like, wow, you are so strong. And I'm like, that's just how I
15:41had to be. When parents see this story who are in a similar situation, I hope that they take away
15:46the fact that we are trying to be as normal as possible. Yes, there's always going to be that
15:53obstacle that you have to go through. Ask for help. Ask for support. You know, the first day you're going
15:58to think the first, why? Why do I got to do this? Why me? Why me? But we always say
16:02this and people
16:02always say this to us is there's a reason he is our son. It's made us stronger as parents,
16:09as husband and wife, with our friends, you know, so it's going to have its challenges,
16:13but I promise you it will have equal and probably even better rewards.
16:20I'm Caitlin Reed and I'm 24. I'm studying human justice at Weber State University.
16:28I was doing acceptance similar to Pyridine Syndrome, which means that I have a small
16:39layer jaw and I don't have jaw genes, so it can't leave. It was a surprise for my parents when
16:50I
16:51I was talking about it. It was hard to go into surgeries and then cutting back to skin.
17:08I can train the middle of I and M to skin on how to use a heating tube to eat.
17:15I can eat a little bit
17:16various areas but I'll mess with a heating tube and then in eighth grade I've got my heating
17:24tube eyes so I'll just eat areas after that. I had a lot of activations growing up. Nice to
17:33know that didn't work to hear that the years are tasty. I had one about three years ago, where they
17:41They took part of their wood and they stuck it in their drawer.
17:48It was pretty successful.
17:50I used to not have anything, any sort of drawer.
17:54But now I have this little piece.
17:57It still doesn't move because I don't have clearance.
18:03I think great about that change.
18:05It is a little bit less than I was hitting here, but it's great.
18:10I've talked to some doctors about surgeries in the future.
18:16I haven't found any that can do exactly what I need.
18:22I have these understood eight children.
18:25My siblings and I are very close.
18:28They are not really perceptive of me.
18:31I mean, in a good way.
18:33I was very independent and we spent a lot of time together just having fun.
18:43I was about 12 or so when Caitlin was born.
18:47When Caitlin was just a little baby, we had a nurse staying full time at our house, particularly at night.
18:53Just watching over Caitlin while she slept because she was attached to machines to monitor her breathing.
18:59And then as Caitlin grew up, I had a close bond with Caitlin because she was just very playful.
19:05We were raised with parents that always had us singing.
19:12Caitlin from a young age was very percussion oriented, probably because of thinking at the time that she wasn't going
19:19to be able to contribute her voice as much.
19:22But she actually does have an amazing voice.
19:24And so when we're singing as a family, it's always nice to be able to hear Caitlin singing.
19:29Practically everybody in the family can play some type of instrument, whether it's piano or guitar or the drums.
19:36Caitlin's pretty much able to play just about all of those, plus the marimba.
19:40It's really been inspiring for myself and for all of our other siblings and parents to see and to witness
19:47how she has really blossomed in spite of having any type of disability.
19:52Caitlin's challenge isn't her actual disability itself.
19:57It's more of the fact that it can affect the way so many people view her.
20:06Posting on TikTok has really helped boost my confidence and just to know that I can do whatever I set
20:15my time to.
20:16I'm always excited to watch Caitlin's videos.
20:18I made this TikTok about how I eat and I felt I was kind of funny in it.
20:26I just eat with my tongue.
20:29I can eat pretty much anything.
20:31It got a lot of positive feedback and it went to a lot more people than I expected it to.
20:41I felt really great.
20:42It was nice to see that I could be a positive influence.
20:48I feel very very blessed to have you not only as a sister but also as a really good friend.
20:56Thank you and I love you.
20:59I don't think there's anything that is stopping me from doing anything in the future.
21:17You can always find something positive and there's always good things around us.
21:32So here we have some photos of when I was younger.
21:36And we also have some photos of me when I was a newborn.
21:41Hi, my name is Kira McCracken and I have a port wine birthmark on my face.
21:47So it means that there is a vein that did not close when you were born.
21:52So it's a bunch of blood capillaries that just ruptured and came up to the skin.
21:57So these are pictures from when I had had laser treatments done when I was a newborn.
22:02And then this was healing time.
22:05And this one is from me a year or two later and we still had another one done.
22:10It would take about three months honestly for it to fully heal after one treatment.
22:15I started feeling self-conscious about my birthmark when I was in sixth grade.
22:19It was not a good point for me in my life.
22:24Self-confidence took a big hit.
22:27I didn't like who I was and I wanted to be someone different.
22:32I was told that my birthmark reminded someone of a dead fetus.
22:38Yup.
22:41So that was the only one that really ever got to me.
22:45That was only to make someone feel like crap.
22:48No, no truth to it.
22:52I started covering up my birthmark because I felt it would make the bullying and name-calling and the staring
23:00while being out in public easier to deal with on a day-to-day basis.
23:04Back in the day, it probably took a lot longer because I had professional grade tattoo covering makeup.
23:17I had an airbrush machine that I would use afterwards.
23:23It used to take probably at least a good hour to get it to not actually be seen.
23:32This is my old photo of me when I used to have makeup covering my birthmark.
23:37That was from 2010, so 10 years ago.
23:42There's another one that says 2010 also.
23:47This one says 2011.
23:55And then we get back into me not covering anymore.
23:59This was one of the first pictures I'd posted after stopping covering my birthmark.
24:12I stopped covering with makeup when I was my freshman year in high school.
24:20I finally just got to a point where I was so fed up and didn't want to have to do
24:25that anymore.
24:25I didn't want to hide who I was.
24:28I just finally said enough was enough.
24:30It made me feel that I was being myself and showing the world who Kira McCracken was.
24:41I moved down to Florida.
24:44That was a big change for me.
24:49And meeting my significant other that I'm with now was a big booster as well.
24:55I met him down there at work.
24:57My birthmark was the key factor of what made him want to come after me.
25:02He was very intrigued and thought it was unique and different and hadn't seen anything like it.
25:08And we were together for about a month and a half when we realized that, surprise, I was pregnant.
25:17And we have been together for six and a half plus years now with a five and a half year
25:22old.
25:23My daughter has asked me about my birthmark.
25:26She's asked me why it is different.
25:28I told her that it's a birthmark and I am this way.
25:31She just looked at me with both her hands and said,
25:33Mommy, you're beautiful.
25:34And that was that.
25:37And that's the best example that I feel I can set for her is to make her feel like she
25:43can be herself no matter what.
25:46I don't really mind stares if you're going to be blunt about it and be rude with it.
25:52I'm going to give you an even worse look back.
25:54I'll make you feel real embarrassed about yourself if they're truly being rude.
25:59If you're a kid, you don't know any better.
26:02I've had kids tell me that my face looked like a blueberry to them and I've said blueberries are awesome
26:07and they said yeah and that they wish their face was a blueberry.
26:09So it just depends on how you combat it.
26:20I love them.
26:22Yeah.
26:27You took very good photos.
26:31We do take a decent amount of pictures together or try to do family shots at least.
26:37I feel like it's really important for me to not cover up my birthmark because it shows people that you
26:43can be yourself and be happy and have a life and do whatever you want to do.
26:49Be unique and stand by it and be out of the box and weird.
26:53Show people that nothing holds you back.
26:59Beauty to me is truly, I mean anything, if you see it in the right light.
27:06There's really no ugly in the world unless you feel that's ugly to you.
27:13I feel it has shaped me to be a strong, independent, motivated person.
27:20I see a very confident, proud woman when I look in the mirror now who is a loving mom and
27:29strong willed, motivated person to achieve their goals.
27:36Are you done?
27:37Okay.
27:38Autumn has neurofibromatosis type 1, where tumors can grow on your nerves.
27:43Autumn has one on the right side of her face and also in her belly area.
27:49We found out when she was about six months old.
27:53I had never heard of an F1, didn't know anything about it.
27:57Autumn, I'm going to put medicine on your little rash spot underneath your nose.
28:01She has some skin issues.
28:05She actually uses this on her eye almost every day.
28:10It keeps it from her eye getting really dry and cracked.
28:13Autumn has tons of birthmarks.
28:15She calls them her angel kisses.
28:17Autumn has a large tumor on the right side of her face.
28:21People can grow tumors on their nerves anywhere, at any point in time.
28:25What do you usually do in the mirror?
28:27Brush my hair and brush my teeth.
28:30You make faces all the time in the mirror.
28:34Selumetinib is a drug that Autumn has been taking to shrink her tumor.
28:39She takes it every morning at 6.30 and every evening at 6.00.
28:45She can't eat two hours before, she can't eat two hours after, and she's supposed to take it about 12
28:50hours apart.
28:51We've seen a lot of improvement. Autumn's face is not as bulgy.
28:55You wouldn't maybe notice all the time, but, you know, you can definitely, it's not as puffy.
29:01Her tumor is definitely shrinking.
29:03We can't see the tumor in her belly, but it's shrinking as well, so.
29:08Here's your little stool.
29:11Can I cut you?
29:13I'll cut you.
29:14We don't have these medical case studies to try to figure out different drugs that will help.
29:20In my family's case, that would be detrimental. Autumn would not have this medicine.
29:24Her tumor would be continuing to grow, and if Autumn's tumor grows and isn't shrinking,
29:31she could have a stroke, she could die.
29:35I don't really know. They don't have an answer for us.
29:37We're going in there.
29:42It's cute.
29:45Alright, now what?
29:46Autumn's gone through a lot.
29:47She is the little kid that goes into the doctor's office and says,
29:51let me take my blood pressure.
29:53Like, let me wrap it on my arm.
29:56You know, she's gone through phases of people making fun of her,
30:00and she, you know, she really kind of turns to the side.
30:04It hurts her feelings sometimes, but, you know, she doesn't let that affect her as much as I think it
30:11could.
30:11Okay, I got four because I like coloring different ones.
30:15Can I color some of those ones too?
30:17Maybe.
30:18You can color on those table trays.
30:20You can color on the table tray if you want, or down here.
30:22Which one do you want to color?
30:23I'm going to color this one.
30:25Oh, color.
30:25We've had people color, like, the Hunchback of Notre Dame.
30:31Or, like, the Elephant Man.
30:33So there's a lot of pointing and, why do you look that way?
30:36I like school. It's just like, I like it better when I'm actually at school.
30:42What do you want to be when you grow up, Autumn?
30:43An Aryan.
30:44I knew you'd say that.
30:47I want to help the animals in the wild.
30:52Honestly, sometimes I think Riley gets more upset than Autumn does.
30:55She supports her sister. She will fight off any bully.
30:58Sometimes when she's crying, I just try to comfort her.
31:02Oh, yeah. She's had some times where kids are really mean to her.
31:07A couple people in my grade would talk about her behind my back and behind her back.
31:12And one day, actually, I'm like, it's not nice. Like, she's my sister.
31:16People in her grade would say really mean stuff, too.
31:21They would, like, make fun of her because of the way she looked.
31:24Like, treat people the way you want to be treated.
31:27That's what I would always say to the people that would make fun.
31:30That's, like, the main thing.
31:37Ready?
31:38It's heavy.
31:39Okay.
31:43Do you want to come around this side?
31:46Yeah, I forgot that I had that.
31:49And I just saw it.
31:52What I like about running my bicycle is, like, because I kind of like holding the pedals.
31:57It's really easy to pedal once you go fast, and I like turning.
32:03Autumn is extremely unique, and we love her for it.
32:06She's super social, very independent.
32:09She knows what she wants, and she's not going to let anybody stop her.
32:12I'm lucky that she is the way that she is because she basically accepts herself.
32:17She really just has a very positive attitude with everything.
32:28You have a hard time especially growing up because I didn't know how other people were going to treat me,
32:35and I was nervous about how I look.
32:38I have a rare condition called Natless.
32:41It's actually a super rare condition.
32:44There was a study back in 2018 that showed that only 300 people had this condition.
32:52At least it's a face mask syndrome.
32:54So for my case, it made my eyes very tiny.
32:57I cannot straighten all my fingers all the way.
33:00I can only straighten out these two fingers.
33:02And it also affected my throat.
33:05So that's why I found this way.
33:07I mean, I had a really hard time with how people couldn't understand me.
33:11That's one of the things that kind of frustrated me when I was growing up.
33:16Morning, Mom.
33:18Hi, Bart.
33:18How old were you when you were diagnosed with this syndrome?
33:22Around the time I was in elementary school.
33:25I was lucky.
33:25I wasn't treated like other kids.
33:28So it kind of made me feel like, yeah, I'm kind of different from everybody.
33:34I had a lot of pain to make fun of me because they don't usually see someone who looks like
33:39me all the time.
33:40Then as I got older, I realized, hey, like, this is how the world's going to be.
33:45I can't really change how other people think about how I am.
33:48My parents helped me a lot emotionally, especially with all my surgeries.
33:53I had a couple surgeries when I was younger.
33:56They actually tried to do surgery on my eye, but they couldn't open it.
34:02And then I had another surgery on my throat, which is my palate, because no one could understand me.
34:08When he was born, we didn't know anything.
34:12We didn't know how long he's going to live or what kind of life he has to go through.
34:19I have no idea.
34:21He had to go through so many surgeries.
34:25I was, like, really heartbroken.
34:28I mean, at the beginning, it was love, and so I was, like, yeah, why is all of this happening
34:33to me?
34:34But as I learned along the way, this was going to be, like, the early blocks.
34:39This is what I'm going to be.
34:40I'm going to use this one day to inspire people.
34:45Unfortunately, sometimes people look at him or how he looks like.
34:50I saw a lot of, you know, time.
34:53He has struggled.
34:55He fights with those situations.
34:58I'm so proud of him that he never really complained.
35:03I think his mind, from the beginning, burns strong.
35:07Really not.
35:08As I look around, I see a lot of people, like, complaining.
35:12Complaining about very small things about their lives.
35:15So I was like, all right, I'm going to take the example of a man who never complains about
35:20anything.
35:21He's just using it.
35:23And that's why I want to teach my kids to do.
35:26If they have the same disability as me, like, you've got to go through life like a warrior.
35:32How important was it having your mom there for you through everything?
35:36Oh, yeah, it was super important that she'd be there.
35:40You know, because who else am I going to go through it with?
35:43Thank you, Mom.
35:45Of course.
35:50My previous surgeries weren't 100% successful, so today I'm going to go see my doctor.
35:57I might ask him, hey, like, maybe if I have another throat surgery, what you do?
36:02Or another mouth surgery where I can open my jaw a little bit more?
36:07What about your eye?
36:09Yeah, I might ask him about that, too.
36:11I'm hoping there will be options for me so I can speak and see easier.
36:19Hey, buddy, long time no see.
36:21Long time no see.
36:21Good to see you.
36:22Good to see you.
36:24It's been a while.
36:26You're 21 now.
36:27Yeah.
36:27I was there from your first minute of being alive.
36:30Isn't that crazy?
36:32Why don't you hop on up and let's get started?
36:34Sure.
36:34All right.
36:35So how's everything going?
36:37Health-wise, are we doing okay?
36:38Yeah, everything's been doing a lot.
36:40I've been doing a lot of workouts.
36:42Yeah.
36:43I've been exercising a lot.
36:44It looks like it.
36:45Yeah, you're looking good.
36:46You're looking good.
36:46But you've had a long road, right?
36:48Yeah.
36:48You've had to see a bunch of other doctors and a bunch of other specialists.
36:53You've had some surgeries, too, right?
36:55Yeah, they were not so successful.
36:57Yeah.
36:58So I'm hoping in the future there's going to be a surgery or something that we can do to fix
37:03that, you know?
37:04Yeah.
37:04Yeah.
37:05Well, you know, your condition is so rare that I think a lot of this we're sort of learning as
37:13we go.
37:13Yeah.
37:13Even for the specialists, none of them have had to deal with a case like this.
37:19Yeah.
37:19So a lot of it is sort of new and experimental.
37:22Luckily, there's a lot of smart people out there doing research on this now.
37:25So, you know, yeah, hopefully we'll have some solutions, you know, coming our way.
37:29Yeah.
37:29But you know, do you know the amazing thing about you, buddy?
37:32Yeah.
37:33You've got a great sense of humor about the whole thing.
37:36And that's how you've been from when you were young.
37:38And that's why I've just enjoyed seeing you here in the office.
37:41Yeah.
37:41I'm grateful.
37:42No, no, I'm grateful.
37:45So I learned a lot.
37:46I consider myself lucky to have met you and to have learned about this condition.
37:52Because again, there's not many doctors in this world that know about this condition.
37:56Keep in touch.
37:57I'm always here for you.
37:58Good to see you.
37:59Good to see you, too, doctor.
38:01You take care.
38:02Yeah.
38:03If you're currently dealing with any type of low-service food or insecurity, then listen to this.
38:10So I started making Instagram videos back in 2024.
38:14And all my friends were like, hey, you're really, you're not even at money.
38:18You're not even in inspiration to others.
38:20So why don't you start content creation?
38:23And then I just started like going out the line from there.
38:26And it blew up pretty quickly, actually.
38:28Like, within just a few weeks, I had like 10,000 followers.
38:32I got a lot of comments on my team.
38:35People calling me different things.
38:37Like, I get this one comment a lot, the engine final boss.
38:41And this boy kind of makes me crack up a little bit because it's like, I really do look like
38:46an engine final boss.
38:50Buddy's an awesome person, awesome soul.
38:53The most impressive, I would say, is just his ability to just take whatever challenge
38:57and just go into it, full steam ahead.
38:59How's it going to feel, buddy?
39:01I'm going to feel real great.
39:04How's that one?
39:05Yeah.
39:05This one good?
39:06Yeah.
39:06All the way in?
39:07Yep.
39:09Everybody's going to play a lot of different games, you know.
39:13One, two, three.
39:25Once you look at him, it kind of makes you go inside yourself and kind of understand, like,
39:33none of us really have excuses.
39:34I was in awe from day one, and he earned my respect instantly.
39:40The way I'm approaching right now is not merely a sense of pride or proudness, but more like
39:45I'm grateful.
39:47I'm grateful to have my career.
39:49I'm grateful to have, like, people around me.
39:51I'm grateful for everything that I've been put through.
39:55Challenges, obstacles, opportunities, whatever.
39:58I'm grateful.
39:59Whatever makes you different, it brings you.
40:02Because that makes you who you are.
40:05That's what's going to make you special.
40:06So, one final message, I say, the universe is great, your life is great, and you are great.