THESE 10 people live with some of the rarest conditions in the world. From rapid ageing, a mysterious fish odour syndrome to conditions that - to this day - remain undiagnosed, there’s no doubt that their medical conditions have upturned their lives and baffled medical professionals across the world. But despite some bleak prognosis’s, they have thrived due to amazing family and friends and an incredible amount of resilience and courage. Their stories are truly inspiring.
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00:00:00These 10 people live with some of the rarest conditions in the world.
00:00:05My rare condition means I love everyone.
00:00:10Me and Erica were stuck together when we were born.
00:00:14Their medical conditions have upturned their lives.
00:00:18There are people that say some rude things.
00:00:21You have boomerang arms or you look like someone that died and came back.
00:00:26And puzzled medical professions across the globe.
00:00:30Katie is very rare. She has not been diagnosed with anything.
00:00:35But despite some often bleak prognoses, they have thrived.
00:00:41It makes me who I am as a person being born like this.
00:00:49Thanks to some incredible loved ones.
00:00:52I worry people will take advantage of her, but I will always be there to protect my sister.
00:00:57As well as an amazing amount of resilience and courage.
00:01:01Who do I look up to the most? I guess everybody.
00:01:04I'm only 3'8", so everybody's above me. I look up to them all.
00:01:12Do you feel like you have defied the odds?
00:01:16Oh yeah, definitely. I didn't think I'd make it to age 30.
00:01:20I really didn't.
00:01:28In Kentucky, a young woman recently became instrumental in discovering the cause and nature of her incredibly rare condition.
00:01:36My name is Monica Zaring. I'm the oldest female known with Sull-Wilson Syndrome in the world.
00:01:43There's only 14 cases worldwide.
00:01:47Sull-Wilson Syndrome is a rare form of dwarfism.
00:01:52Although not a lot is known about Sull-Wilson Syndrome, the characteristics include short stature, microcephaly or a smaller head, hearing loss and early developmental delays.
00:02:04I am 42 inches or 3'6".
00:02:08Sull-Wilson Syndrome is a genetic mutation in the gene. It's not something that is hereditary.
00:02:14Around this community, I'm known as Monica's mom.
00:02:17Because Monica doesn't change a whole lot and people always remember her.
00:02:26We had no idea that Monica would be born with any differences or special needs.
00:02:31In fact, she was the only child that I had an ultrasound with and he said everything was fine.
00:02:36So it was a complete surprise.
00:02:38So how many pounds do you need?
00:02:40I've learned to adjust.
00:02:42I mean, I don't let anything stop me.
00:02:45For the most part, I live a fairly normal life.
00:02:48I have a full-time job. I drive a car.
00:02:51I went to high school and graduated college.
00:02:53My parents raised me to believe that I could do anything.
00:02:57My parents raised me to believe that I could do anything that any other person in the world could do.
00:03:02I just might have to do it a little bit differently.
00:03:13Unfortunately, we had a lot of misdiagnosis when I was younger.
00:03:17We went through many, many doctors on our own
00:03:21trying to get an understanding of what needs there were and what to expect down the road.
00:03:32We were given a very bad diagnosis at one point
00:03:36and the doctor had actually told my mom to enjoy the time she had and kind of gave me a week to live.
00:03:47I mean, I had amazing support with my family and friends.
00:03:52They were always willing to fight for me no matter what I faced.
00:03:55They were like, we're going to get through this.
00:03:57We're going to find a way that way you can live a normal life.
00:04:04Ready to cause some trouble?
00:04:05I'm always ready.
00:04:07When Monica and I are out, we've had one experience where we had a gentleman want to take her picture.
00:04:13And I just stood and I said no and he kept saying yes and I kept saying no
00:04:17because that's not something you just start snapping pictures of people
00:04:21just because they're different than you.
00:04:26I don't truly understand Monica's whole condition.
00:04:29I don't look at it as that.
00:04:31I look at Monica as the person that she is.
00:04:34With Monica's condition being so rare, a lot of her childhood was spent looking for answers.
00:04:42These are some that brought back memories.
00:04:43Oh my gosh.
00:04:45I grew up without any kind of answers.
00:04:48And I always said that if I got the chance to help doctors find answers for future generations,
00:04:54then I would do it.
00:04:55That was like this one with you and mom.
00:04:57Six years ago, Monica provided her DNA to a new groundbreaking study.
00:05:02And five years later, her rare form of dwarfism was finally identified.
00:05:08The doctors did major research actually on Monica.
00:05:13They had a method for pulling the protein out, as I understand it,
00:05:16and it backed up what they were researching.
00:05:20The research found that Sore-Wilson Syndrome is caused by a mutation in a single gene
00:05:26located on chromosome 16q22.
00:05:30We now have a diagnosis. We have the gene. We know the gene that causes it.
00:05:34There's 14 now cases with it.
00:05:38It was great to have that diagnosis confirmed and to know exactly where it comes from.
00:05:43It's a big step, but to me there's also still a lot more things we have to learn.
00:05:48I mean, I still don't really know the life expectancy.
00:05:51They're still finding characteristics out and everything.
00:05:54It was a huge step, but I know this is just the beginning.
00:05:58I've never really known what the future might hold,
00:06:01but they kind of gave me some reassurance that, for the most part,
00:06:05I will be okay for the next 10 years.
00:06:11Do you feel like that you have defied the odds?
00:06:14Oh, yeah, definitely. I didn't think I'd make it to age 30.
00:06:18I really didn't.
00:06:20I'm going to be a good mom.
00:06:22I'm going to be a good mom.
00:06:24I didn't think I'd make it to age 30.
00:06:26I really didn't.
00:06:35When I graduated college, I was the last one to cross the stage,
00:06:38and we were told nobody was allowed to clap.
00:06:41I had to wait until the very end.
00:06:43When I crossed the stage, I went like this.
00:06:45To me, that was like sticking it to the doctors.
00:06:48That was proving them wrong.
00:06:55Do you like it, Donna?
00:06:57Let's say you go over here.
00:07:00I'm very happy to be where I am today.
00:07:04I always kind of figured I'd have a normal life.
00:07:06I mean, that's what my parents instilled in me.
00:07:08For some people, reaching 30 might mean this,
00:07:10but to me, it means 18 surgeries later.
00:07:14It means a high school and college education degree
00:07:17that doctors said I would never obtain.
00:07:19It was me chasing and going after the career I wanted.
00:07:22It was me living the life that I was meant to live.
00:07:28In Ohio, 18-year-old Kaylee lives with an incredibly rare condition
00:07:34known as progeria.
00:07:36Do you want to look at some of these old albums I found?
00:07:39Yeah.
00:07:40Look how little you are there.
00:07:43And I look about the same, just chubbier.
00:07:46When you were born, you were 6 pounds and 5 ounces.
00:07:50You were tinier, but it's not super, you know, super, super tinier,
00:07:55but you were smaller than your brothers.
00:07:58When I was pregnant with Kaylee, she was my fourth child.
00:08:01I had three other boys, and it felt just like the pregnancy with them.
00:08:05I noticed no difference at all.
00:08:08Progeria is a rapid-aging disease.
00:08:11It causes you to lose your hair and makes you smaller, age faster.
00:08:17When Kaylee was diagnosed, I'd never heard of progeria, so I was scared.
00:08:22When she was born, they didn't know anything was wrong.
00:08:26It wasn't until she was about 6 months.
00:08:28We went to the doctor, and she was 9 pounds, 6 ounces.
00:08:31They really kind of started freaking out a little bit.
00:08:34Finally, right after she was a year, that's when they finally diagnosed her
00:08:38with progeria after we'd already seen specialists for about 6 months,
00:08:42different ones.
00:08:44Third and fifth grade was when I stopped growing.
00:08:47I am 3'8", and I'm 35 pounds.
00:08:52I was 3'9". Was I 3'9"?
00:08:54You were about 3'9 until you had your hip surgeries.
00:08:56Yeah, then they cut me down an inch.
00:08:59I thought they should have gave me an inch.
00:09:02Living with such a rare condition means making adjustments
00:09:05to how she navigates the world.
00:09:07I had my hip surgeries because my hips were dislocating.
00:09:11I can just about walk as far as, like, a mile or so.
00:09:15I have to use a wheelchair if I'm, like, with a group of people
00:09:20and we're walking a far distance.
00:09:23Obviously, it's hard for me to keep up.
00:09:26Here are the photos from your clinical trial.
00:09:29I think they're getting ready for a blood draw.
00:09:31The experimental drug that I was on, it helped a lot of progeria kids.
00:09:36It slows down the aging.
00:09:38It helps me live longer and all that.
00:09:43I mean, it does have a lot of side effects with, like,
00:09:45stomach problems and all that stuff, but it's still worth it.
00:09:49I really don't like being pitied.
00:09:52Just because I've had this condition my whole life,
00:09:55it's nothing new to me.
00:09:57When I first started posting on social media,
00:10:00it was definitely elementary school.
00:10:02Every time someone, like, with progeria passes,
00:10:05I'll get, like, the amount of comments of rest in peace goes way up.
00:10:10My comments are, like, arguing about whether I'm alive or not.
00:10:14Some of them even argue with me.
00:10:15I'll comment back and be like, no, I'm still alive.
00:10:17And they're like, no, you're not.
00:10:18I'm like, what?
00:10:20I'm still here.
00:10:22My progeria does not define me.
00:10:24I just try to post positivity and show people my personality
00:10:30that even with progeria doesn't make us any different.
00:10:34Some of the nice feedback I get on my social media
00:10:37is just people calling me an inspiration.
00:10:41Some people say that I'm pretty.
00:10:44I'm meeting my friend Faith and also my friend Kaylee.
00:10:50I've known these friends since I was in kindergarten,
00:10:53so we're very close and we hang out every weekend.
00:10:56Who do I look up to the most?
00:10:58I guess everybody.
00:11:00I'm only 3'8", so everybody's above me.
00:11:03I look up to them all.
00:11:07I do have my license,
00:11:09so I am looking forward to when I finally get my van modified to my height
00:11:13so that I can be more independent.
00:11:21Hey.
00:11:23How are you?
00:11:25Good.
00:11:30Those look so good.
00:11:32Didn't we meet in hip-hop?
00:11:34Yes, it was hip-hop.
00:11:36Cheer dance. We did have cheer dance.
00:11:38And we killed it.
00:11:40How old were we then?
00:11:42It had to be first grade, kindergarten.
00:11:44Yeah.
00:11:46I believe it's just right when I met you,
00:11:50we definitely clicked right away.
00:11:52I felt like we were going to be friends forever,
00:11:54and clearly we are.
00:11:56There's just so many crazy memories.
00:11:58I don't even know where to start.
00:12:00A really long time ago, we had big sleepovers with everyone on the team.
00:12:03Oh.
00:12:05You would always be the judge in our ugly dance-offs or whatever,
00:12:10and then you would have the big microphone or whatever,
00:12:13and you would always be like,
00:12:15next up to the stage.
00:12:17That was real fun.
00:12:19Whenever I'm in a room with you, I'm just always laughing,
00:12:21and many memories of just laughing.
00:12:25I just really appreciate how passionate you are
00:12:28about whatever you do.
00:12:32I don't dance anymore because of my hips,
00:12:34but I've been painting for about three years or so.
00:12:38I like to just see what I can paint,
00:12:42kind of challenge myself to do something harder and harder
00:12:45every time I paint.
00:12:47She wants people to like her for who she is.
00:12:49I was talking to one of their teachers,
00:12:51and she said to me,
00:12:53I forgot Kaylee even has progeria.
00:12:56Once you get to know her, you forget,
00:12:58because her personality is so big.
00:13:00My biggest goals for the future, I guess,
00:13:03is to just be independent
00:13:06and be able to drive myself places,
00:13:09having a good job,
00:13:11maybe possibly living on my own,
00:13:13but my mom thinks I should live in the backyard
00:13:16with a tiny house. I don't think that.
00:13:19I want more pets, so that's why I want to move out,
00:13:22so I can have more pets.
00:13:24And I want to study human resources.
00:13:27My attitude in life is just to be positive.
00:13:34Ryan was born with a condition
00:13:36that has caused his arms and hands to fuse.
00:13:41I've lived here about three months.
00:13:43This is the first time I've ever lived on my own.
00:13:46Normally I just have to put things
00:13:48where I can reach them and set them up.
00:13:50When I go to the bathroom,
00:13:52I can use the side of the cabinet
00:13:54to get my pants up and down and stuff like that.
00:13:57I've been used to doing it pretty much my whole life.
00:14:01I'm Ryan. I'm 26.
00:14:03I was born with arthrogryposis
00:14:05in the joints in my arms and legs.
00:14:07It didn't develop all the way.
00:14:09It basically just means
00:14:11that your joints are fused together.
00:14:14I really don't know a whole lot about it.
00:14:16I just know that it limits my mobility
00:14:18in my arms and my legs.
00:14:20My legs actually bend a little bit.
00:14:22And the odd thing is that I can move my toes,
00:14:25but I can't move my fingers.
00:14:27So, yeah, it's pretty crazy.
00:14:30And now it's time to put my clothes on.
00:14:33And I need to make my bed.
00:14:36It was a struggle growing up
00:14:38and having to depend on family and other people
00:14:41to get around or, you know,
00:14:43change clothes and stuff like that.
00:14:45As I got older, I started figuring out
00:14:47how to do all these things.
00:14:50That's how I do that.
00:14:52I've always tried to find ways to do things on my own
00:14:55because I don't like asking people for help.
00:14:59But, yeah, that's how I do that.
00:15:02When Ryan was born,
00:15:04the doctors had a very bleak outlook
00:15:06on how he'd be able to live his life.
00:15:08Hey, Mom.
00:15:09Hey, son.
00:15:10When he was born,
00:15:11I kind of explained it as he was folded in half.
00:15:14His legs were up by his ears.
00:15:16They took him out of me,
00:15:17and he went straight to the NICU.
00:15:19They said that he wouldn't be breathing on his own.
00:15:22But luckily, Ryan proved his prognosis wrong.
00:15:25This was right after you were born.
00:15:27You were probably about six or eight weeks old.
00:15:30As a baby, I mean, he was completely normal,
00:15:33except for the normal, quote-unquote, normal things
00:15:36he couldn't do.
00:15:37He couldn't get up and crawl around.
00:15:39In the beginning, he scooted around on his bottom
00:15:42to get places, which is what he did at school.
00:15:44So they wanted him to use a wheelchair
00:15:46and have someone move him around,
00:15:48and he didn't want to do that.
00:15:49So we got him going on a walker,
00:15:51and he was able to keep up and do his own thing.
00:15:54I could scoot out of my pants
00:15:56and take myself to the bathroom,
00:15:57and I use my mouth to grab a lot of things.
00:16:00My mouth is basically kind of like hands for me.
00:16:03I can't really use, like, a spoon or a fork,
00:16:06so I just have to eat like a dog is what I call it.
00:16:12I don't let anything get me down.
00:16:15I don't make any excuses.
00:16:16I've just, I've learned how to do so many things
00:16:19for myself over the years.
00:16:21I'm gonna make a TikTok right quick.
00:16:23So I use my knuckles, and so I just go like this.
00:16:27I'm on my way, baby!
00:16:30One of my buddies came over one time,
00:16:33and it's always been a joke about me
00:16:35having a big head and little arms, like T-Rex thing.
00:16:38And he's like, you should upload a video
00:16:40of you acting like a dinosaur like you usually do.
00:16:43People just ate it up.
00:16:45I just hit 111,000 followers,
00:16:48so it's pretty cool, yeah.
00:16:52Putting himself out there on social media
00:16:54has opened Ryan up to a lot of people.
00:16:57Social media has opened Ryan up to a world of negativity,
00:17:01but he never lets it get the better of him.
00:17:04There's people that have said,
00:17:05oh, you have boomerang arms,
00:17:07or you look like someone that died and came back,
00:17:10blah, blah, blah, blah, blah.
00:17:12A lot is people are like, wow, you know,
00:17:15you're so inspiring, and you're extraordinary.
00:17:18And, like, one time I went to the mall with my best friend,
00:17:21and, like, these two girls were, like, walking by,
00:17:24and they were like, oh, my God, that's Ryan from TikTok.
00:17:27And, like, you would have thought I was, like,
00:17:29Justin Bieber or something,
00:17:30the way that they were acting about it.
00:17:32Yep.
00:17:33Ready to go party?
00:17:35Let's do it.
00:17:36Let's get you ready.
00:17:37I just had my birthday this past Monday a week ago,
00:17:40so I'm going to go out and celebrate with friends.
00:17:43Oh, yeah, we didn't get to do much on his birthday.
00:17:46We're going to go to the bar.
00:17:47I think they've got something big planned.
00:17:50I'm not sure.
00:17:51Cool.
00:17:53Let's roll.
00:17:59The question that I get asked a lot is,
00:18:01well, if you could have surgery to fix it, would you?
00:18:03And I'm like, no, I don't think so,
00:18:06because it makes me who I am as a person being born like this.
00:18:11He has a great positive outlook,
00:18:13and he's gotten so far with that.
00:18:16His heart is the size of Texas, so.
00:18:18We live in such a hateful world,
00:18:20and, you know, people are just so rude to each other,
00:18:23and I think that the biggest thing I always tell people
00:18:27is don't live your life based around other people's opinion about you.
00:18:32At the end of the day, you know, we all go in the ground by ourselves,
00:18:35so you just need to be true to yourself.
00:18:37I'm on my way, baby.
00:18:46I'm Alexandra.
00:18:47I'm 27 years old,
00:18:49and I have Williams syndrome.
00:18:51I'm Victoria.
00:18:52I'm 30 years old.
00:18:53I'm this one's sister.
00:18:55Williams syndrome is a rare genetic condition
00:18:58caused by the deletion of genetic material on chromosome 7.
00:19:03It's characterized by cognitive and developmental issues.
00:19:08Along with the developmental delays,
00:19:10they also have very, like, highly social personalities.
00:19:14Hi, I'm Alexandra.
00:19:16I have Williams syndrome.
00:19:17They all have an affinity for music.
00:19:19Do you know Knuckleback?
00:19:21I do.
00:19:22Love that band.
00:19:24They have similar facial features,
00:19:27and y'all have a wider mouth,
00:19:29and then y'all usually all have, like, the starburst blue eyes.
00:19:33A lot of y'all do.
00:19:34Oh, yeah, if you came close to my eyes, you would see it.
00:19:38Hi.
00:19:39I talked to my friends that have the same Williams syndrome.
00:19:44She's made Williams syndrome friends from all over the world.
00:19:49They Facebook Messenger all the time, like all the time.
00:19:53I'll be, like, sewing, and I'll look over,
00:19:57and some of them are sleeping,
00:19:59and they're, like, watching each other sleep.
00:20:01Some of them are, like, dancing and doing their own thing.
00:20:03We're really crazy.
00:20:05What do y'all ask me to do to Alexandra when y'all are on the phone?
00:20:09Oh, no, no, no, no, no.
00:20:10I know where this is going.
00:20:11Don't.
00:20:12Huh?
00:20:13You can tickle her.
00:20:14And tickle her.
00:20:15Ah!
00:20:18It doesn't feel tiring to match her happy energy.
00:20:21She's always been that way.
00:20:23It's always been consistent in my life.
00:20:25Me and my sister spend every day together.
00:20:27I love hanging out with her.
00:20:30We are going to the thrift store to find new items
00:20:36so we can create something really cool today.
00:20:39Put your shoes on, girl.
00:20:41Sometimes we argue.
00:20:43I mean, we're sisters.
00:20:44That's what sisters do.
00:20:46She's a precious sister.
00:20:48That's why.
00:20:49Where's your jacket?
00:20:50Throw me mine.
00:20:55Totally threw it, so I threw it.
00:20:57You did.
00:20:58You did throw it.
00:21:02My parents were always very open and honest about her disability.
00:21:07Our mom, she took her out of school,
00:21:09and she got homeschooled where she could have the one-on-one attention
00:21:12that she actually needed.
00:21:13It was kind of in that point where kids aren't so as accepting
00:21:19when they kind of get to that age where they start forming friend groups
00:21:22and, oh, she's a little different.
00:21:24That's something I really, I don't think she would have been able to handle.
00:21:29But she didn't have to go through that.
00:21:31No.
00:21:32Are you happy?
00:21:33Are you happy about that?
00:21:34Oh, yeah.
00:21:35Alexandra and her sister have always been close
00:21:38and have found unique ways to bond.
00:21:43Oh, this is not as cute as I thought it was.
00:21:47She has so many cute clothes.
00:21:51It's ridiculous.
00:21:52I love clothes.
00:21:54They're so pretty.
00:21:56Well, we like fun, happy, like funky clothes.
00:22:01It's kind of hard to find, so we just make our own.
00:22:04It's like treasure hunting.
00:22:05We like treasure hunting.
00:22:07And then we like creating.
00:22:09So we treasure hunt and create all at the same time.
00:22:13That's funky.
00:22:18I get excited immediately.
00:22:20She goes like this.
00:22:23She got blue nails.
00:22:24Those are cute.
00:22:26Are you a people person, Alexandra?
00:22:28Yeah, if I know them well enough.
00:22:31Yeah, but back when you were younger, it wasn't if you knew them well enough.
00:22:36I used to love hugging people that I didn't know,
00:22:40because it made me happy.
00:22:42She would wander off and just give anybody a hug, which is sweet,
00:22:46and most people don't mind.
00:22:48But some people do mind.
00:22:50Not everyone is friendly.
00:22:52Not everyone has good intentions.
00:22:54It took a while for you to understand that.
00:22:57Victoria taught me not to.
00:23:00I worry people will take advantage of her,
00:23:02but I will always be there to protect my sister.
00:23:05In the car.
00:23:08Good job.
00:23:09So the mottos that are on our clothes,
00:23:11we try to use phrases that are like be yourself, stay weird, normal is boring.
00:23:18You know, if you're weird, that's fine.
00:23:19Like embrace how you're unique.
00:23:21I love that one.
00:23:22You like this one?
00:23:23Mm-hmm.
00:23:24Of you?
00:23:25Yeah.
00:23:26It says normal is boring.
00:23:27And it has the Williams Syndrome logo on there as well.
00:23:30So any of our items, like t-shirts wise,
00:23:32that we make that has the Williams Syndrome logo,
00:23:35we donate a portion of our profits to the association.
00:23:39These colors match together.
00:23:41You like those colors together?
00:23:43Yes.
00:23:44So I do the sewing, because I enjoy it,
00:23:46and she like has no interest in sewing.
00:23:49But she helps.
00:23:51You want to cut it?
00:23:52When she cuts, it's a little jagged, but I like that.
00:23:55It just adds some uniqueness to it.
00:23:58She likes to, I mean, have the final say-so on the designs
00:24:03to make sure that they're Alexander approved.
00:24:06So all of the designs have been Alexander approved before they go on the website.
00:24:11And I'll get something, and I'll say, what do you think about this?
00:24:14And she'll be like, no, that's ugly.
00:24:16And so I'll try again until—
00:24:18I'll be honest with you, I will tell her how it is.
00:24:21This one's one of my favorites because it has me on it.
00:24:26You cut off the bottom to this to make it like frayed and worn looking.
00:24:38Oh, okay.
00:24:40Walk towards me with your model walk and runway go.
00:24:47And then strike your pose.
00:24:49Good job.
00:24:50Alexander, how do you feel when you're modeling?
00:24:54I feel good.
00:24:55She is the best model.
00:24:57Oh, oh, I look good.
00:25:00Which one do you think?
00:25:02Oh, that one's cute.
00:25:03You like that one?
00:25:04Yeah.
00:25:05I like that one.
00:25:06And we make videos.
00:25:08What do we make videos for?
00:25:10TikTok or Instagram.
00:25:12Are you ready?
00:25:13Yeah.
00:25:14I feel like I have tried to create platforms to where it is positive
00:25:20and there is love.
00:25:21Everyone gets trolls, and it would really irk me
00:25:26when they would make comments on my sister.
00:25:28And that was part of the reason why I was hesitant in the beginning
00:25:30to even put her on social media.
00:25:32I mean, there are things that could get her down,
00:25:36but she chooses not to, so it makes me proud.
00:25:40Just the way that she loves and cares about people
00:25:43is a good reminder for me to just see the world from her point of view
00:25:50because I think our world, especially nowadays, just needs a lot more of that.
00:26:03In the UK, radiographer Kelly has a very unusual metabolic condition
00:26:09with a rather unpleasant symptom.
00:26:12The main scientific name for it is trimethylaminuria.
00:26:17It's also known as fish odour syndrome.
00:26:22The condition affects her on a daily basis
00:26:25and first became apparent to her when she was in school.
00:26:31There was more than one occasion where I'd say,
00:26:34oh, I've had fish paste sandwiches for my lunch,
00:26:37when kids would say, oh, you smell of fish.
00:26:40That was quite difficult to deal with as a teenager.
00:26:45The fact that she was bullied about it
00:26:48made it ten times worse, I think, for her
00:26:51and certainly for me. It bothered me.
00:26:54I was spending a stupid amount of time in the shower,
00:26:58red hot water scrubbing until my skin was bright red.
00:27:09But Kelly's condition isn't caused by poor hygiene.
00:27:13Her body is unable to break down a compound found in food called choline,
00:27:18which means a lot of ingredients are off the menu.
00:27:22One of the things that they say to you is,
00:27:24if it smells going in, it's going to smell coming out.
00:27:27So things like fish, seafood are all triggers.
00:27:32The body disposes of the compound in sweat, breath and urine,
00:27:36emitting a pungent odour that can resemble
00:27:39rotten fish, onions and faecal matter.
00:27:43As far as I know, this condition affects
00:27:47between 300 and 600 people worldwide.
00:27:51It's not a very well-known condition at all.
00:27:55A lot of GPs have never even heard of it.
00:27:58In fact, Kelly diagnosed herself.
00:28:01From watching documentaries about it,
00:28:05things just started to fall into place.
00:28:08It was like, that sounds like it could be me.
00:28:12And ultimately I ended up being tested
00:28:15and it came back positive.
00:28:19There's no magic pill that you can take to make it better.
00:28:24I personally take a cocktail of medications.
00:28:34That's the pills that I take.
00:28:36We don't know whether they work or not,
00:28:38but I try and keep on top of it as best I can.
00:28:42There's very few other symptoms at all,
00:28:46but of course you've got the side effects of anxiety,
00:28:50social isolation, it's hard.
00:28:54To limit the amount of people she's exposed to,
00:28:57Kelly took a job working nights.
00:29:00But it's not been easy.
00:29:02You could trace Kelly's smell up the corridor.
00:29:06Certain people had made comments.
00:29:08What was upsetting her was how people were dealing with it.
00:29:12And at that point she wasn't herself.
00:29:15I've had many complaints about Kelly's smell to me
00:29:18from a variety of staff within the department.
00:29:22It's hard when you get these complaints
00:29:24as Kelly's a good friend.
00:29:27But finding love gave Kelly a much-needed confidence boost.
00:29:32Michael's helped me to cope
00:29:34by making me see the funny side of the condition.
00:29:37I didn't really notice her smell straight away
00:29:40when we first started seeing each other.
00:29:42I don't believe she tried to hide it.
00:29:45Kelly's confidence has definitely improved over the years.
00:29:50She still doubts herself a little bit there and again.
00:29:55I think the best way of me helping Kelly with the condition
00:30:00is to be supportive about the condition.
00:30:03I'm sure he won't mind me saying this,
00:30:05but he produces his own smells anyway.
00:30:13Kelly is now open with friends and colleagues and patients.
00:30:18I am more chilled out about it now.
00:30:21I can't say that if somebody complained tomorrow
00:30:25I wouldn't still find it a little bit cutting.
00:30:29But I deal with it by educating that person now.
00:30:37She's compassionate, she's hard-working.
00:30:41She's innovative, really, in her job and her home life, I think.
00:30:47I'm very proud in the way she copes with the condition.
00:30:50I'm very proud of her as a person, full stop.
00:30:59We have five children, and the youngest of which is Davey,
00:31:04and he's got Leishmanian syndrome.
00:31:08In Washington state, the youngest son of the Wickland family
00:31:12has a rare and life-threatening condition.
00:31:16In a nutshell, Leishmanian syndrome is basically cerebral palsy.
00:31:21Davey's got the extreme with self-injury,
00:31:25injury of self and injury of others.
00:31:28It's very rare, it's only one in 380,000 births.
00:31:32He'll bite their fingers, bite their toes,
00:31:35and if someone is close by, he'll lean over and bite them.
00:31:39Not that he actually goes for them, but if you're close by,
00:31:42his mind kicks in and says, I need to bite you.
00:31:45To protect Davey from self-harm, we have to have him wear arm braces,
00:31:49keeps his hands from reaching his mouth.
00:31:52We've had to make special kangaroo pouches for his legs
00:31:55so his feet don't kick too far.
00:31:57So basically, if you look at his wheelchair, he's got straps everywhere.
00:32:01If he turns around to see that there's anything hard,
00:32:04he will hit his head.
00:32:06Whenever he's near anything dangerous, it's all covered.
00:32:09So at bedtime, we take him out of his hard-arm guard,
00:32:12we put this on him, and it goes over like this, over his shoulder,
00:32:16and you can see how long it is.
00:32:19He can freely bend his arms, but he can't get to his fingers.
00:32:23These are other versions I made out of foam, out of string trimmer.
00:32:28So all of these things I have to redo
00:32:32because each time I make a new thing, he outmaneuvers me
00:32:37and finds a way to hurt himself, so I end up making another kind,
00:32:40and another kind, and another kind.
00:32:42And if he bites too much on his lip, then we can put this in his mouth
00:32:46so that he'll bite on this rubber instead of on his lip.
00:32:50So he kind of goes in phases with his self-injury.
00:32:53Right now he's not needing this at all.
00:32:56So this is how he lives.
00:32:59We'll just head forth a little bit.
00:33:02We'll just head forth a little bit.
00:33:08Okay, move it over.
00:33:10That's it!
00:33:12Yeah, that's not very good, huh?
00:33:14Do you have a towel?
00:33:20Yeah, he tries to eat the soap in the bathtub too.
00:33:23Stay still, stay still.
00:33:25Do your best.
00:33:27Davey's self-harming first began when he was just a baby.
00:33:30One year, four months, was when he started going like this with his lip,
00:33:35and it started to bleed more and more,
00:33:37and it was the very first time we'd ever seen it happen.
00:33:42He had no appetite either, and he kept losing weight,
00:33:45so we had to get a gastrointestinal tube put in him
00:33:49so that we could feed him directly into his stomach.
00:33:52If I stay up, then, yeah.
00:33:56I found my bad one.
00:34:00Someone with the syndrome is unable to produce a certain kind of protein.
00:34:05Because of that, they can develop stones in their kidneys.
00:34:09Do you feel it going into your tummy?
00:34:11Yeah, after.
00:34:13After?
00:34:15This has kept you alive for many years, huh, buddy, when you couldn't eat?
00:34:18When I was a baby.
00:34:20When you were a baby and you couldn't eat, yep.
00:34:23Now you can start eating, right?
00:34:25Yeah, finally.
00:34:27My other kids love Davey.
00:34:30They know he needs help.
00:34:33Sometimes they do resent having to help
00:34:35because they want to live their own life and do their own thing, I understand.
00:34:39But they love him deeply.
00:34:41It's like a cat and mouse game,
00:34:43where whenever we make a solution,
00:34:45he eventually finds a way to still hurt himself.
00:34:48So it makes you really feel bad.
00:34:52Davey has really brought our family together.
00:34:55It's a sort of connection.
00:34:57It's a really strong bond.
00:35:05Davey needs 24-hour supervision.
00:35:08Lecheunian syndrome requires the caregiver to always be near him
00:35:12because we do all the extra body care.
00:35:15All they have to do is play with Davey and keep him contained.
00:35:21Transports? Okay.
00:35:24We've gone through, how many, five, six?
00:35:27One has stayed six months, another has stayed four days, another stayed two.
00:35:31But the latest one, Cynthia, she has been a godsend.
00:35:37She came to us about 11 months ago.
00:35:41What?
00:35:42I know, there's only one guy there.
00:35:44You probably could have took that.
00:35:48I don't think they should attack it because there's like...
00:35:51It's okay.
00:35:53The most rewarding thing is seeing him light up.
00:35:56It warms my heart.
00:35:59As far as Davey's disability,
00:36:02I haven't seen anything like it before.
00:36:06Let's go, let's go, let's go.
00:36:08Despite his rare condition,
00:36:10his parents have kept his life as normal as possible for him.
00:36:14Davey is 11 years old and he goes to the elementary school nearby.
00:36:18Hello, how are you?
00:36:21One nation, under God, indivisible, with liberty and justice for all.
00:36:28He's one of the American artists who is still alive.
00:36:34They've rigged up the whole classroom
00:36:36so that Davey can enjoy all the activities with the other kids.
00:36:39Okay, so...
00:36:41Again.
00:36:42Again.
00:36:50In my special ed classroom, Davey fits in with everybody.
00:36:54He's just part of the class.
00:36:56Other students can't always understand him.
00:36:59He's great at math.
00:37:01He has to talk a teacher through his math problems.
00:37:04He's really sensitive.
00:37:05He'll even notice if I'm having a bad day
00:37:07or if I got frustrated with a student.
00:37:09He'll say, Miss Rhodes, are you okay?
00:37:13Thanks, Davey.
00:37:19Average life expectancy.
00:37:22You're looking at the teens, roughly 19 on to mid-20s.
00:37:31Okay, let's pull your shirt down.
00:37:35It's hard, but we're actually able to make a life for him
00:37:41that will give him joy.
00:37:45I first thought he might die at a young age.
00:37:48So I bought a big camera because I wanted the memories.
00:37:55In case he did pass away early,
00:37:59I would always see pretty depressing shots of disabled kids.
00:38:04So I decided I wanted to have the world know
00:38:07what it was like to have a child like Davey.
00:38:11Full of joy and yet disabled.
00:38:24He's a cute little guy.
00:38:27He's always laughing, smiling, making jokes, teasing us.
00:38:33He does have his moments when he has pain, obviously, and he cries.
00:38:37But he doesn't linger on that very long.
00:38:39And he's joyful.
00:38:42He cannot have a typical, normal life.
00:38:46But the best we can give him is what we're giving him now.
00:38:55Californian-born twins Eva and Erica were born conjoined.
00:39:03Eva's very talkative, outspoken, hard-headed.
00:39:08She's always smiling.
00:39:11Erica is the happy-go-lucky.
00:39:13They're both happy-go-lucky girls.
00:39:15They're very smart.
00:39:16They're very smart little girls.
00:39:19Me and Erica were stuck together when we were born.
00:39:22Do you remember being together?
00:39:25No.
00:39:26Yes.
00:39:27I don't.
00:39:29Eva always took my toy and put it in her mouth.
00:39:35So the girls were born conjoined August 10, 2014.
00:39:39They were connected from the bottom rib cage to the pelvis.
00:39:45They shared a bladder and they shared a third leg.
00:39:49My pregnancy with the twins was a pretty big surprise to all of us.
00:39:54When he said, your babies are conjoined, I must have liked space.
00:39:58I just, I wasn't grasping it.
00:40:00The risk of delivering the twins, it was 30% chance of survival.
00:40:05And for us, making the decision of bringing them into this world
00:40:10and letting them come as far as they could, we were willing to do.
00:40:15When they were born, it wasn't clear whether it'd be possible to separate them.
00:40:20Come on.
00:40:21We were willing to accept them if they couldn't separate them,
00:40:24except in the way they were supposed to be.
00:40:26But when given the opportunity to separate them, we took that opportunity.
00:40:32What are you doing, Eva?
00:40:34We came to the conclusion that we definitely want them to have that individuality
00:40:38where they have two separate lives.
00:40:41The doctor's goals were to make them grow, have them grow
00:40:44before we take that next step of separating them.
00:40:48So Eva was the bigger baby of the two.
00:40:50The doctors were noticing how Erika was fading into Eva, into her body.
00:40:54And as time went on, you saw Erika shrinking into Eva.
00:40:59And Eva was becoming this little four-pound baby, three-pound baby.
00:41:04It looked like, she looked like the baby.
00:41:07And Erika looked like the attached baby.
00:41:10So we decided that we were going to separate them.
00:41:13We were going to separate them.
00:41:15She looked like the baby, and Erika looked like the attached person to her.
00:41:21When the girls were separated, they were 16 months.
00:41:24And that day, I felt peace.
00:41:29We had a lot of family.
00:41:32We had a lot of support.
00:41:34People that didn't know us were reaching out.
00:41:37We had a lot of family there.
00:41:39It was a team of 50.
00:41:41Doctors, nurses, anesthesiologists.
00:41:45Yeah, it was about 17, 18 hours.
00:41:47It was a beautiful day when they told us,
00:41:50you know, we have, you have two girls.
00:41:52You know, you have two babies.
00:41:54After successfully separating the twins,
00:41:57they began to adjust to life as two.
00:42:00So I used to call it the crab crawl.
00:42:03The way they moved when they were first conjoined.
00:42:07Now they just scoot.
00:42:10They scoot pretty fast.
00:42:14Since the girls have been separated, they have adapted very well.
00:42:17They love doing their own thing.
00:42:19They have their individual personalities.
00:42:21They love different things, which, again,
00:42:24I stress to them that it's okay to be different.
00:42:27I love reading like Belle.
00:42:30She likes books, so I like the same thing.
00:42:34I like playing basketball.
00:42:40Lay down.
00:42:42So we're putting a patch on.
00:42:45The brain is not connecting to her right eye,
00:42:47so it's making her left eye work harder.
00:42:49So what we're doing is relaxing the left eye.
00:42:52So we cover, we patch the left eye, the good eye,
00:42:55so she can use her right eye.
00:42:59They're doing great with their prosthesis.
00:43:01They're doing great just walking.
00:43:03You know, hopping is what I call it.
00:43:05So, again, there is no plans in the near future
00:43:09for any type of surgery for the girls.
00:43:11So my hopes, our hopes for the future for the girls
00:43:14is that they succeed in anything that they do.
00:43:17That they know that just because they're a little different,
00:43:21it doesn't make them any less stronger than the next person.
00:43:25What do you like to do when you grow up?
00:43:28I want to play basketball just with Kobe Bryant.
00:43:32I like to do when I grow up to be a vet.
00:43:39We have had our moments, our situations,
00:43:42where there are people that don't understand
00:43:46why I brought them into this world.
00:43:48There have been comments made, and I say,
00:43:50we each have our own, you know, decisions
00:43:52why we choose to bring someone into a world.
00:43:56Our choice was to have these two little ones,
00:43:59you know, and give them an opportunity.
00:44:01I think just the decision of bringing them into this world
00:44:04was the best decision ever.
00:44:10In Arizona, Ashley is one of only 93 people in the world
00:44:14diagnosed with her rare condition.
00:44:17Major syndrome is a craniofacial deformity
00:44:21in the face, arms, and hands,
00:44:23and there's only four in a hundred cases in the world.
00:44:28My arms are short,
00:44:30so there are things I cannot do for myself.
00:44:33I have to learn to...
00:44:37figure out ways to make it work for myself.
00:44:44For a long period of time,
00:44:46I would have to stay in another school.
00:44:48I just had to learn by thinking outside the box
00:44:52on how to adapt to the outside world.
00:44:55When I was born, I didn't really have a jaw,
00:45:00so they had to take bone from different parts of my hand,
00:45:07and they implanted with a jaw,
00:45:11and then just extracted it to make it more outward.
00:45:16And then I had surgery on my cheeks,
00:45:18so I didn't have any cheeks, nose.
00:45:21So they had to implant nose,
00:45:23and I had other facial surgeries, other stomach surgeries,
00:45:27and then I had surgeries on my hands,
00:45:30where they took both of my index fingers
00:45:34and they rotated them into my thumbs.
00:45:38It was challenging,
00:45:40because I was the only one who had an index finger.
00:45:44So a lot of folks at school were making fun.
00:45:50They would call me names, like T-Rex,
00:45:53and it was really, really fun.
00:45:58I was crying all night.
00:46:00I just had a hard time,
00:46:03but I didn't let it affect my schooling.
00:46:06Due to her rare condition, Ashley struggled to date.
00:46:10There were a lot of times where people wouldn't really give me the chance
00:46:14to, like, get to know me or get to know them,
00:46:17and it just kind of hurt,
00:46:20because it felt like they were judging me for how I looked
00:46:25rather than trying to get to know who I am as a person.
00:46:28So that was a little tough.
00:46:31Matt!
00:46:32What's going on?
00:46:33My lips.
00:46:34Oh, worried for your hair now?
00:46:36Yeah.
00:46:37Okay.
00:46:38Me and Matt met online 14 years ago.
00:46:42We were best friends for a very long time,
00:46:46and then in 2019, we officially met in person for the first time,
00:46:52and then we've been dating ever since.
00:46:55Beautiful.
00:46:57He didn't really treat me like I was different.
00:47:02He treated me like I didn't really need to treat someone else,
00:47:06and that's what really got me attracted to Matt,
00:47:11because he was so different from the other boyfriends I had.
00:47:15He literally took me as a whole person.
00:47:19He'll help me with all kinds of stuff, really.
00:47:22I mean, he'll help me with everything if he can.
00:47:25I help Ashley with her hair, putting on her top if she needs help with her top,
00:47:30just basic things that would require extension and height.
00:47:54Everybody needs help in life.
00:48:00I know that I have a significant other who supports me in what I want to do,
00:48:07and I support him, so we're like partner tribe, if you want to call it that.
00:48:13Matt is my life.
00:48:18He's everything.
00:48:21You want crushed ice or ice?
00:48:23Crushed.
00:48:25Crushed ice it is.
00:48:26The couple have a strong bond,
00:48:28but despite that, they still face prejudice about their relationship due to her rare condition.
00:48:46It gets me really frustrated.
00:48:49There's definitely times that she has to hold me back,
00:48:53because if we're at a grocery store and someone is just looking at her for no reason,
00:48:59trying to judge her, I just ask if they've got a staring problem,
00:49:02or do we need to go up and talk somewhere?
00:49:07So I don't like it. At all.
00:49:10Comments or anything like that, it's mainly on social media,
00:49:14where people would make inappropriate comments,
00:49:19and I don't really like it to me.
00:49:22I don't live in to that type of environment,
00:49:26so I just kind of shrug it off and let it go.
00:49:33People with physical disabilities can also do things,
00:49:39even if it's not a different way to make the dance room happen.
00:49:45I feel like I'm going to kill a man when I'm dancing.
00:49:49I don't feel nothing.
00:49:50I don't feel freedom.
00:49:52I feel the music.
00:49:54I don't feel nothing but music and dancing.
00:49:57I love when Ashley posts her dance routines on social media.
00:50:01I know she gets an outstanding response every single time,
00:50:04but what I love most about it is that she's continuing to take away excuses
00:50:10where other people come up with syndromes for themselves and say,
00:50:14I have two left feet, I can't dance.
00:50:16Ashley's standing up here with Negger syndrome and is doing it.
00:50:20She's executing the moves, despite what limitations her body might give her,
00:50:25and by doing that, she's inspiring other people that are just like her,
00:50:29other people that have bodies that are different than her,
00:50:32and people that might be self-conscious to show up for their first class.
00:50:38I feel like I need to do that to show people,
00:50:42hey, this girl can really infuse that Negger syndrome.
00:50:46If she can do it, I can do it.
00:50:48And that's the main reason why.
00:50:51I do like the fact that I was born different,
00:50:54just because it's brought out so much confidence in me, I guess you could say.
00:51:01And now it's just like a complete re-fix me.
00:51:07I feel really unique when I know that there's less than 100 people that have my condition,
00:51:14because it just means that we're special, that we're one of a kind,
00:51:18and I kind of like that.
00:51:27We found out when I was about six months pregnant with her
00:51:31that she was going to have megalocephaly.
00:51:34We still don't know what else she has.
00:51:37Nine-year-old Katie was diagnosed with megalocephaly at birth,
00:51:41a growth development disorder characterized by overgrowth in the brain.
00:51:46However, this diagnosis doesn't explain the other symptoms Katie experiences.
00:51:52Her main side effects, she has seizures,
00:51:55and they can go from the ones where she just kind of stiffens up a little bit
00:52:02to where she has the ones where she jerks really bad.
00:52:07She cannot talk, she doesn't walk.
00:52:13I do not know why her face is the way it is.
00:52:17I do know that when she has surgeries,
00:52:20they tell us the only thing that they move from her face is like fatty tissue.
00:52:25Katie comes from a large family.
00:52:27She has seven biological brothers and sisters, plus step-siblings,
00:52:32so she is never short of care.
00:52:34Katie's happy.
00:52:35She loves to do most anything that any other kid could possibly do her age.
00:52:41She just loves life, loves to be playing.
00:52:44She also has a little devious side to her,
00:52:47where she likes to try to booby-trap the house to see if she can make us fall.
00:52:53She likes to throw things at us sometimes,
00:52:56and she finds it very hilarious.
00:52:58She will actually just yell at us like, oh, yeah, I've done something big.
00:53:03She has emotions.
00:53:04She goes if something hurts her, she'll cry about it.
00:53:08If something's funny to her, she's going to laugh about it.
00:53:12I think the best thing about Katie is her personality.
00:53:16She's very outgoing and wild, and she has an amazing laugh.
00:53:21I mean, like, she knows she can do certain things.
00:53:27Everything that she eats has to be pureed.
00:53:30She can eat a little bit by mouth when she chooses to.
00:53:34She can drink by mouth, and she really loves to drink.
00:53:37She likes Coke and tea, and she even likes to get into her daddy's coffee
00:53:44and stuff like that.
00:53:47But at this point, as far as I know, no one knows anything that's wrong with her.
00:53:53They checked her for dorthism.
00:53:55They checked her for so many other ones that I can't even remember at the moment,
00:54:01and everything comes back that she doesn't have it.
00:54:05And if they can't figure out what she has, they'll just name it after Katie.
00:54:11When Katie was first born, the family traveled to visit pediatric specialist Dr. Roman Yusupov.
00:54:18He was unable to diagnose her, but has been monitoring her development since then.
00:54:24I have never seen anything like it.
00:54:26She is truly unique, perhaps one in a million.
00:54:30Her diagnosis is truly interesting.
00:54:32I think she has what is known an overgrowth syndrome,
00:54:36in which different body parts start to increase in size, hypertrophy,
00:54:42because the muscle cells and other cells, soft tissue cells, start to divide rapidly.
00:54:47So in her, unfortunately it happened in her face and in her brain.
00:54:52Due to Katie's mysterious condition, she has had numerous surgeries since birth,
00:54:58starting with brain surgery at just nine months old.
00:55:02Since birth, Katie has had her brain surgery, her tonsils removed,
00:55:08her trach surgery, her feeding tube, they downsized her ear, her tongue.
00:55:14Her cheeks have been downsized several times,
00:55:17and she's had two cysts removed off of her head.
00:55:22So she's had quite a few surgeries, a lot more than any baby should have had.
00:55:30As Katie's condition remains undiagnosed, her future prognosis remains unknown.
00:55:36She just makes the most of what she has.
00:55:39I don't really think that she knows a difference.
00:55:41She wakes up and that's who she is.
00:55:44You never know how long she's going to live.
00:55:46No one expected her to even come home, and she's nine now, so that's crazy.
00:55:52I used to be very nervous to look after Katie on my own.
00:55:56On my own time, I would run outside and be like, hey, he's having a seizure.
00:55:59Other than the seizures and all, I'm okay with it now.
00:56:04I really think that her future is going to be as happy as we can possibly make her future be
00:56:11and as content as we can possibly keep her.
00:56:15She makes me happy.
00:56:17We can be having one of the rottenest days in the world, and we do have some of those,
00:56:21and she'll just laugh or she'll smile.
00:56:25She gives us so much. She just makes us so happy.
00:56:28In the U.K., Millie has a condition so rare, she often finds herself explaining it to doctors.
00:56:35My condition is called cystinosis.
00:56:38It's really rare. There's only 3,000 of us worldwide.
00:56:42It's a genetic metabolic condition, which means a protein called cysteine
00:56:47builds up in my organs and cells.
00:56:49It mainly affects kidneys, and then it kind of also affects my heart.
00:56:55It mainly affects kidneys, and then it kind of also affects my eyes,
00:56:58and then later on in life, other organs.
00:57:03That's my tablet alarm.
00:57:05This is my biggest kind of medication, as I have to take it four times a day every six hours.
00:57:12So I have to wake up in the middle of the night to take it.
00:57:16I have to take about 30 tablets a day.
00:57:21It was in the early days of infancy when her parents first realised something was seriously wrong.
00:57:27This is when we first realised that something wasn't quite right.
00:57:31I was tube-fed from around the age of one.
00:57:34This was kind of around the age I was diagnosed,
00:57:36when my parents realised when I was moving from kind of milk to solids,
00:57:40I wouldn't keep anything down.
00:57:42When I was young, my condition affected me quite a lot.
00:57:45When I was young, my condition affected me quite a lot.
00:57:48My parents used to have to get up during the night as I was vomiting,
00:57:52and I'd wet the bed several times a night.
00:57:55When we were told by doctors you were diagnosed,
00:57:57it was pretty much one of the worst days of my life.
00:58:01The thing that made you realise you were different is people's reactions at school.
00:58:05I definitely felt different because of my height.
00:58:08Kids are mean.
00:58:09I did get bullied for my height, but mainly when I was a teenager.
00:58:13My height is four foot seven.
00:58:19A lot of doctors don't understand my condition.
00:58:22I've literally sat while the doctors Googled my condition,
00:58:25or I've been telling them about my condition.
00:58:29Even when you had the tube down, people used to stare and point every now and again,
00:58:33and come over and say,
00:58:34is your daughter alright, or what's that for?
00:58:36Which was lovely, because they were curious.
00:58:38I think the key moment was when you decided you wanted to eat for yourself,
00:58:42and you had very headstrong views.
00:58:45Actually, then it was around the same time that you were taking control of your medications as well.
00:58:51In order for you to lose your tube,
00:58:54you had to start swallowing multiple tablets, and big tablets.
00:59:00When I was 18, I'd finally managed to teach myself to eat,
00:59:03and eventually I'd proved enough for them to remove it.
00:59:07So you didn't eat your entire life,
00:59:09and the first thing you ever had was a fillet steak.
00:59:11And that's all you ate then, for about a year.
00:59:13I used to chew my food loads, and then I used to,
00:59:16because I knew how to swallow tablets,
00:59:18I used to swallow my food like I did the tablets.
00:59:20I'd chew it, put it on my tongue, and then drink with some water.
00:59:24And that's why I used to get so full, because I'd have a jug of water to myself.
00:59:28In the last four years, I've had two kidney transplants.
00:59:31My first transplant was from my mum.
00:59:34Unfortunately, I got a blood clot, and there were lots of complications,
00:59:38which ended up me being extremely ill, and ended up in ICU for over three months.
00:59:43You've always been unbelievably resilient.
00:59:46You've always been unbelievably...
00:59:47Bright.
00:59:48Bright, and tough, and determined.
00:59:51I mean, I know that's partly because of your condition,
00:59:53partly because of the treatment you've had,
00:59:55but it's serving you so well now, Millie.
00:59:58Despite the challenges she's faced,
01:00:00Millie has an amazingly positive outlook on life.
01:00:03My condition has made me who I am 100%.
01:00:06And I think the fact that I've gone through so much hard times
01:00:10has made me a much more stronger, resilient, and motivated person,
01:00:14and that I just want to live life to the fullest.
01:00:17I'm unapologetically me,
01:00:19and I found this through my hair colour, my makeup, and my fashion.
01:00:22It's really helped me embrace who I am.
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