Living With Progeria | BORN DIFFERENT

Ajouté : 2026-06-01

[00:00:00]Pier's causes rapid aging. I'm 18 years old.

[00:00:03]>> I'm 23. I'm basically a very old person in a very small body.

[00:00:08]>> At 16 years old, you don't want to hear that you're aging faster.

[00:00:13]>> I have a lot of issues which older people tend to have.

[00:00:16]>> My biggest concern is him not being here. Just not here.

[00:00:20]>> The doctor says Luke's going to die before I die. We know that time is our enemy. The typical life expectancy for someone with pergeria is roughly 7 to 13 years. I am now 43. I'm sitting here for the world to see me with no teeth.

[00:00:40]>> I'm still here. My peria does not define me.

[00:00:43]>> Do you want to look at some of these old albums I found?

[00:00:46]>> Yeah.

[00:00:47]>> Look how little you are there.

[00:00:50]>> I look the same, just chubbier.

[00:00:54]When you were born, you were 6 lb and 5 oz. You were tinier, but it's not it's not super, you know, super super tiny, but you were smaller than your brothers.

[00:01:05]When I was pregnant with Kaye, she was my fourth child. I had three other boys and I had it felt just like the pregnancy with them. I noticed no difference at all.

[00:01:15]>> Pger is a rapid aging disease. causes you to lose your hair and makes you smaller, age faster.

[00:01:24]>> When Kaylee was diagnosed, I'd never heard of PGeria, so I was um I was scared. When she was born, they didn't know anything was wrong. It wasn't until she was about 6 months. We went to the doctor and she was 9 lb 6 oz. They really kind of started freaking out a little bit. Finally, right after she was a year, that's when they finally diagnosed her with progeria after we'd already seen specialists for about 6 months, different ones.

[00:01:50]>> Around fifth grade was when I stopped growing. I am 38 and I'm 35 lb.

[00:01:59]I was 39. Was I 39?

[00:02:01]>> You were about 39 until you had your hip surgeries.

[00:02:03]>> Yeah. Then they cut me down an inch.

[00:02:06]I thought they should have gave me an inch.

[00:02:10]I had my hip surgeries because my hips were dislocating. I can just about walk as far as like a mile or so. I have to use a wheelchair if I'm like with a group of people and we're walking a far distance. Obviously, it's hard for me to keep up.

[00:02:28]>> Here are the photos from your clinical trial.

[00:02:31]>> I think they're getting ready for a blood draw. The experimental drug that I was on, it helped a lot of proje. It slows down the aging and it helps me live longer and all that. I mean, it does have a lot of side effects with like stomach problems and all that stuff, but it's still worth it. I really don't like being pied just because I've had this condition my whole life. It's nothing new to me. When I first started posting on social media, it was definitely in elementary school. Every time someone like with Pderia passes, I'll get like the amount of comments of rest in peace goes way up. My comments are like arguing about whether I'm alive or not. Some of them even argue with me.

[00:03:17]I'll comment back. I'm like, "No, I'm still alive." And they're like, "No, you're not." I'm like, "What?"

[00:03:22]That I'm still here. My Pgeria does not define me. I just try to post positivity and show people my personality and that even with Pgeria doesn't make us any different. Some of the nice feedback I get on my social media is just people calling me an inspiration and some people say that I'm pretty.

[00:03:47]I'm meeting my friend Faith and also my friend Kaye. I've known these friends since I was in kindergarten. So, we're very close and we hang out every weekend. Who do I look up to the most? I guess everybody. I'm only 38, so everybody's above me. I look up to them all.

[00:04:09]I do have my license, so I am looking forward to when I finally get my van modified to my height so that I can be more independent.

[00:04:24]Hey, >> how are you?

[00:04:28]>> Good.

[00:04:29]>> Oh, that looks good.

[00:04:31]>> You're welcome.

[00:04:31]>> Those look so good.

[00:04:32]>> They look really good.

[00:04:34]>> Did we meet through in hip-hop?

[00:04:35]>> Yes, it was hip-hop.

[00:04:37]>> Mhm.

[00:04:38]>> Cheer dance. We did have cheer dance, too.

[00:04:40]>> And we killed it.

[00:04:41]>> Yeah. How old were we then?

[00:04:43]>> It had to be like first grade, kindergarten.

[00:04:46]>> Yeah. Around. Yeah.

[00:04:48]>> Yeah. I believe like it's just right when I met you like we definitely like clicked right away and I felt like we're going to be friends like forever and clearly we are. There's just like so many crazy memories I don't even know where to start. Really long time ago when we had like big sleepovers with like everyone on the team. Oh, >> we you would always be the judge in our um like ugly danceoffs or whatever and then you would have the like big microphone or whatever and you would always be like next up to the stage.

[00:05:20]>> Those were fun. Whenever I'm in a room with you, I'm just always laughing and many memories of just laughing. I just really appreciate how like passionate you are about like whatever you do.

[00:05:35]I don't dance anymore because of my hips, but I've been painting for about 3 years or so. I like to just see what I can paint, like try to challenge myself to do something harder and harder every time I paint.

[00:05:49]>> She wants people to like her for who she is. I was talking to one of their teachers and she said to me, "I forgot Kaylee even has P, you know, Pgeria."

[00:05:59]Like once you get to know her, you forget because her personality is so big.

[00:06:03]My biggest goals for the future, I guess, is um to just be independent and be able to drive myself places, having a good job, maybe possibly living on my own, but my mom thinks I should live in the backyard, like a tiny house. I don't think that, but um I go I want more pets, so that's why I want to move out so I can have more pets. And I want to study human resources. My attitude in life is just to be positive.

[00:06:40]I'd say the relationship between us is like every brother and sister relationship. We fight a lot but at the end of the day we love each other. The condition we have is called preeria.

[00:06:52]Preeria is an aging disease which causes me to age eight times faster than normal. Uh, I'm basically a very old person in a very small body. We surpassed the medical expectations because when they find out that we have Peria, they said we were only going to become 12 years old and I'm now 23. My sister's 15. We're doing very good. The things that affects her daily life the most is like the small things, you know, pick things off the top shelf or open a a bottle. Those are very simple things for normal people, but for us are really hard because we're not that strong and we are very short.

[00:07:35]I started streaming games about 2 years ago for the very first time. Hey, good luck everyone. Have a good game. The positive reactions have been that a lot of people find a lot of inspiration in my streams. The negative reactions are mostly that I look weird, that I look different. A lot of people think that I'm still a little kid, so I get a lot of reactions when I'm streaming late at night that why am I not in bed and if I don't have school tomorrow and stuff. It can get a bit too much sometimes. Most of the times it doesn't really affect me. Go with it in a very positive way. I just try to laugh with it.

[00:08:12]I'm a very positive guy mainly because of my parents who the way the way they raised me. But I've always known that that with my disease I need to make the most of it with the little time that I have. Even though it it sounds really bad, it has a really positive effect on the way I live my life.

[00:08:32]>> The negative comment that M gets online, it doesn't really affect him. He just laughs with it and you know makes a funny comment out of it. Most bad reactions that I get online on social media are mainly about my appearance because it's it's very obvious that I look different. So I just always try to see the funny side of it. Turn the negative things into something positive.

[00:08:58]My sister Amber, she's the same as me.

[00:09:01]So she's very positive in life. Hey, what's up Tik Tok?

[00:09:06]Hey, what's up Tik Tokie boys? Back streams are coming back. I've been away for a while, but the streams and the Tik Toks are coming back.

[00:09:14]>> Make sure to click the link in the bio and watch on Discord for more information.

[00:09:18]>> The funniest one, the guy that said, "If you're asked if you're my girlfriend, that was kind of funny how many times it has been asked."

[00:09:26]>> Yeah, a lot of people always think that you're my girlfriend.

[00:09:31]>> My friend Sean is also coming over today. It's always nice to have friends over that support me. The way I see them, it's uh like they're fighters. Uh but they are also really mellow, a little bit carefree.

[00:09:44]>> She can be annoying sometimes, like every sister can be, but uh at the end of the day, I love her and I'll always be here for her. So, I'm excited to see to what kind of woman she grows up to.

[00:09:56]He also can be annoying sometimes, but um yeah, I still love him and I'm glad that he's my brother. What do I hope for in the future? Be alive for a long time and live a long life together.

[00:10:11]>> For me, the same just making great memories um with friends, family, enjoying life.

[00:10:18]What I would like people to know about my condition is that we might look very different from normal people, but we are still just as normal as anyone else on the inside.

[00:10:41]PGaria is a rare aging disorder.

[00:10:44]Kids that have it normally pass away by the time they're 10 to 15.

[00:10:52]I have a very moderate case, but I was told at a very early age that it would be a miracle if I would live to be 30 years old.

[00:11:04]So, I am obviously doing well.

[00:11:08]30-year-old Charlie is one of the oldest surviving people living with a very rare form of progeria. Her type of the condition was so unusual that it took doctors 16 years to formally diagnose her. At first, they thought that it was a hole in the heart. That's when it started. My whole life from 2 years old until I was about 16, I got diagnosed non-stop doctors, non-stop poking and proddding. When I was born, my my teeth rotted out. Before they even came in, they were rotted. This picture actually my teeth are fake.

[00:11:47]I do have the features of someone that has progeria and you can tell by looking at me. I don't look 30. I look older. As a kid, I got it a lot. And it's hard when you're 15 years old and people think you're 30.

[00:12:06]That was rough.

[00:12:09]But even when I was younger, people think I'm 21. I was only 18. Could drink at an early age. It was funny. It came in handy. So, >> as a child with PGeria, Charlie found herself the target for many bullies.

[00:12:24]>> I got heed so bad in middle school, but high school wasn't as bad. I had a very wide group of friends. I wouldn't say I was popular, but I wasn't, you know, not popular. It wasn't until Charlie left school that she met someone who she could really connect with.

[00:12:42]>> Tony and I met on a dating site.

[00:12:47]>> That's real life.

[00:12:49]>> You know, you're too big to get up with.

[00:12:52]>> He does that every day.

[00:12:56]>> I think I loved him the moment I met him.

[00:12:59]>> Tony is legally blind and he and Charlie bonded immediately.

[00:13:05]She just seems like a regular person to me. I never realized anything different and she's really a very strong person, very independent and supports me more than anything.

[00:13:21]>> 18 months into their relationship, the pair decided to get married.

[00:13:26]>> My wedding day was perfect. It was everything I could dream of.

[00:13:36]Walking down the aisle and seeing Tony, I was so nervous. So nervous. But as soon as I got to him, I was like, "This is it.

[00:13:48]My whole life's about to change."

[00:13:51]It was the happiest day of my life.

[00:14:00]>> Hey, sister.

[00:14:04]She is a very positive person and you have to be positive. You have to be positive with what she has gone through and is what going to continue to go through because this world is very cruel and the world will not change for one person.

[00:14:22]>> So this is my engagement iPad. Instead of a ring, this is what I asked for.

[00:14:29]You have to stay positive for yourself.

[00:14:31]And she she's like a bright light for other people.

[00:14:36]>> All right. Good boy. Good boy.

[00:14:40]>> Uh-oh. I think mom is on backwards.

[00:14:43]>> Makes people look to the bright side of what they've been dealt with.

[00:14:50]>> By being with Charlie, it changed my perspective on a lot of things.

[00:14:57]One in a million is the best way to describe her.

[00:15:01]>> Um, as far as how long I'm going to live, no one knows.

[00:15:14]There is going to be a point where my life will be shortened. And I know that.

[00:15:18]And it took me a long time to come to terms with it. And it's actually easier to live with now that I'm happy and I have somebody who loves me.

[00:15:30]If I could tell anybody one thing about Brgeria, it would be it's not always negative.

[00:15:42]If you can see the positive in it, you'll have a great life.

[00:15:55]Peria is the a defect a genetic defect which causes rapid aging due to the excess release of of the toxin pagerine which everybody has and that basically makes you age. But obviously when we release excess of it it obviously makes us age faster which can cause a lot of problems.

[00:16:13]I'm Harry. I'm 20 years old. I'm the only boy in the world with atypical pureria syndrome.

[00:16:27]The classical pageria is known as hutchin guilford pageria. they release the toxin pagurine which makes them age faster whereas in my genetic defect for some reason it doesn't release the gen purine which is very confusing for a lot of people because I'm getting the symptoms of aging faster but I'm technically not genetics wise which is why I can't obviously use the classical peria treatment nobody else in my family has peria it was a random genetic fluke basically Uh there was no genetic like passing down to parental or grandparental genes.

[00:17:08]It was just a complete random chance.

[00:17:12]>> Beeria affects my health in several ways. I get a lot of issues which older people tend to have. So I have arthritic pains. I have a joint pains. I have a deterioration of the bones in like my fingertips and my hands. I get tired easily and small for my height.

[00:17:30]Basically everything like somebody's granddad or grandma would have wrong with them. So on the terms of medication, I take 5 milligs of starting a day and then 75 milligs of aspirin a day and they're basically just to help with thinning the blood. I take them pretty much every day and I use this to help keep track of everything and which ones I've taken. So you just pop it open and take the pill.

[00:17:53]So, I was first diagnosed with pgeria when I was 7 years old. At the time of diagnosis, I knew something was different about me, but I didn't really understand what it was. I just knew I was different from other kids.

[00:18:06]>> Harry is my third born. He's my last child.

[00:18:10]>> We went to see various experts throughout his young life and it wasn't until he was at the age of seven when somebody thought it might be Pgeria and we were sent to America where we got the diagnosis that it was atypical PGeria syndrome. This condition was explained to us that it was a less severe form than Hutchinson Guilford. Um they knew that Harry had a shortened life expectancy, but they weren't able to tell us at that time how long he was to live.

[00:18:34]>> One of them pretty much standing with us.

[00:18:36]>> So I recently went to uh Japan with my brother Jack. Obviously with my interest in Japanese anime and manga, that was a great experience for me. Uh I also have an upcoming trip to Finland. Traveling can be uh pretty difficult sometimes even though I love it so much due to all like medication I take. So I take a lot of uh pills for me like painkillers when it comes to like walking and traveling in general. Uh I have arthritis and I get tired very easily. There obviously some obstacles when it comes towards traveling but I try like not let it get me down. I try keep going and just have as much fun as possible.

[00:19:12]>> I know you don't like coffee. I don't know why.

[00:19:13]>> My biggest concern is him losing, you know, not being here.

[00:19:19]just not here. Sorry.

[00:19:25]I worry about all my children's future, but I especially worry about Harris cuz we don't know how long we've got him.

[00:19:32]>> I don't really think about it. I'm just me. I just I don't try bring any attention towards it in my daily life. I usually make fun of it most of the time.

[00:19:44]I don't really let it get me down or anything. just try to see the brighter side of things. I guess I walk a dog at least once a day. You know, it's just that little bit of exercise that helps uh with joint pains and exercising and uh my hips especially. Uh it's a it's a lot of good uh work to do.

[00:20:13]>> Pretty much have arthritis in every part of my body. So I get pain everywhere but it's on so I have pain constantly every day. So on a day-to-day basis I don't really take any medication. I just get on with it.

[00:20:28]>> Harry's got a Facebook page called atypicaperia syndrome. This was set up um by ourselves when Harry was first diagnosed. We wanted to reach out to other families to see if there are any other families like Harry and to raise awareness of the condition. I'd love to bring as much awareness to it as possible.

[00:20:46]>> It's important to raise awareness for Pgeria because we can't believe that there isn't anybody else like Harry.

[00:20:54]>> Might be somebody that's just waiting to get your diagnosis that you need.

[00:21:12]So, >> so even though we've known each other for years and years and years, what what do you actually know about?

[00:21:20]>> I think not a right lot to be honest with you. I don't think it's not something I've really ever wanted to to ask about everything that I know about you on your personality. So, if you're I know that if you're down, then there's something potentially up with you. And it's if you're not down, then great. all good to go, if you know what I mean. Does it make sense?

[00:21:43]>> He just loves life. He loves his life.

[00:21:45]It might not be great, but he just gets on with it. And he enjoys being around people that he cares about. He enjoys his dog. He enjoys his gaming. He just loves everything about his life. I think I hope I like to feel I'm a positive person here. I don't let anything annoy me or get me down. It's like if it's not in my control, what can I do? So I just take it as it goes really. My hopes for the future are just basically to to live a live a long happy life with as many people as I can.

[00:22:26]Luke is 6 years old now and his condition is uh called progeria. It's a rare condition. It's 1 to 8 million gets progeria.

[00:22:35]Two people in Germany also known with Pgeria only two and worldwide there are 120 I think.

[00:22:44]Okay.

[00:22:46]Very good. We need a little bit longer for the breakfast because Luke has no hunger. He has no feeling of hunger.

[00:22:52]Every 5 minutes I must say Luke come on eat something.

[00:23:01]Very good. And that's his medicine. It's called Lonaf and he must take it every 12 hours and it's proof that's give us more time. Uh normally the persons with pgeria live till 15 16 years. So that's a hard number for us. He knows what pgeria is.

[00:23:23]The lifetime the that's the thing we don't want to tell him how much lifeline he has because he's 6 years old. Yeah.

[00:23:32]Uh Luke is now 95 cm and he's not gaining height anymore. The visual things, no hair. Yeah. And he has no weight. Other children has 20 kilos. He has nearly 11 kilos now.

[00:23:58]He was born with hair in 2014 but um when he gets I think a year old his hair are falling down. We met doctors 60 70 years old even the retired doctor says I have never seen it before and it lasts as I said nearly a year if you got a diagnosis.

[00:24:19]It was a long time and a hard time for us because you're standing there as parents and you don't know what your boy has.

[00:24:36]I quit my job immediately. I have no time to work. 8 hours work, that's 8 hours less for Luke and for me in life.

[00:24:45]We want to raise him like a normal kid, but we know he's not a normal kid. Yeah.

[00:24:50]Sometimes other um parents took their children and um took go away from him.

[00:24:56]They don't explain their kids. They only said go away from this boy with with no hair. Sometimes you can't protect him because other people are so rude or uninformed. There are only two known um people with bger in Germany and with two people is no research possible here.

[00:25:17]That's why we have to fly to the US and there we can get this medication for Luke. We try to raise money with the GoFundMe page because we have to pay the flights to the US and I'm I'm grateful for every for every scent we get. The other ways we try to raise money for Luke is with social media. We have um account at Instagram. We have 220,000 followers all over the world. We have also there over 200 followers at Tik Tok and uh the main thing is our um YouTube account. Um yeah, we post YouTube videos to raise awareness and to raise money for his condition. With this accounts um many people knows Luke and he knows not that we have a nearly half a million followers. That's a number I think he cannot um grab but um he knows he's a little celebrity because sometimes people came to us and say hey you look I know you from Instagram and then he's proud a little bit. Yeah. Our message for the world is enjoy your time. It doesn't matter how long you have. Luke, make us laugh every day. When Luke's going to bed in the evening and when Luke says, "Dad, it was a good day. My mission is completed for this day."

[00:26:35]We're positive about the future. It's a must. He's running around. He's smiling at us. He has the blue the bluest eyes I ever had seen in my life.

[00:26:46]We know the time is our enemy, but our time is very limited. And that's why we make the best of it every day.

[00:27:01]>> She's such a good snuggler, too. Like, she cuddles like a person. My name is Tiffany and I have a rapid aging disease called progeria.

[00:27:10]The typical life expectancy for someone with pergeria is roughly 7 to 13 years.

[00:27:16]I am a medical anomaly. I am now 43. The last time Barcraftoft filmed me.

[00:27:24]I don't let Pgeria define me. That's not who I am. I just happen to have this which makes me special in a way. Since I have last filmed with Barcraftoft, my medical situation has changed. I have started taking the new medication for Projury, which is the Lauren Farib. When I first started taking it, I was struggling a lot. Stomach issues, throwing up, diarrhea, you know, it was it was hard. This is a natural remedy.

[00:27:56]Also, it is a highly potent cannabis concoction. So, I take it like this. A little bit on my whatever it is that I'm eating. Oh, dear God.

[00:28:07]Like this.

[00:28:09]Mhm.

[00:28:11]There's that. I've been dealing with the side effects from that uh medicine on top of having my teeth removed. I've had all of my adult teeth pulled now except for five, which I am in the process of having them all removed. And it's due to my disease. The roots were resorbing, just pretty much disappearing. And then that's what causes my teeth to get infected. I'm sitting here for the world to see me with no teeth because there could be worse things. I'm still alive. I still have my health and I have a lot going for me. So, you know, I have a lot of people that love me and they don't care if I have teeth. I started losing my hair in my 20ies.

[00:28:58]The hair loss is a result of my disease.

[00:29:01]What happens to you when most people when they get older? They start to lose their hair. They start to lose their vision. They start to lose their teeth much later in life. But these things happen much earlier in life for kids that have it. I do have insecurities about wearing wig. Well, I don't feel insecure around my friends and family, but I do feel insecure about going out into the public.

[00:29:31]People already stare at me enough as it is.

[00:29:35]So, imagine no cheek, no hair. It's going to make it worse.

[00:29:42]Um, I've had to get comfortable with it because at first I felt like everybody could tell that it was a wig.

[00:29:50]But you can't the more I like, you know, act natural. But I really don't know what that I don't know what natural is because I've never had this much hair.

[00:29:59]So, um, I'm working with it. I'm starting to have fun with it and I'm excited to get more styles. I'm rocking it. The confidence is there.

[00:30:10]Michelle has helped me tremendously um, with me getting my teeth pulled. Um, she's been taking me to my appointments.

[00:30:19]She's been there to allow me to cry and ball my eyes out. So, she helps me just encourage encourages me and reminds me that I am a badass, strong warrior and I've been through a lot and I can I can fight through pretty much anything. So, when I was first taking her to have her teeth removed, like I documented all of it. that recorded it because she very much was like, "This could be used to help somebody else who has to go through this process." Cuz it was a hard process. She's just one of those people that she would literally give you the shirt off her back. Like she she's more concerned about other people than she is herself. Always.

[00:31:05]So, here at Wonderless Studio, we have yoga classes and creative workshops. We also carry local art and vendors local to Columbus and Ohio, including my candles. Oh, this is my art. I also do art. This is my art. This is sort of like my personality on canvas.

[00:31:27]And we both make the candles together now because he cuts the bottles and occasionally wakes them ahead of time.

[00:31:36]And we can make we can make one for you.

[00:31:38]Good luck. Come on. It's a team effort now. So, here is um the wax in melted form and pour it in here.

[00:31:54]That's that process. Good job. Teamwork.

[00:31:58]She's awesome to be around, but you also know she's very dependable. She'll do whatever she can to help you if you're in need. And if you're the one that's down, um, she's definitely one to come pick you back up.

[00:32:11]>> If I'm not happy, I can't make anybody else happy, right? So, and I want to make the world happy. I want to affect the world with my happiness, right? I am I am funloving and I do have a, you know, a a good attitude, but um, I am still a person and I still go through things. So, I just want people to be aware that there is so much more to life than right now. I just want people to be grateful for what they have cuz it could be gone just like that.

[00:32:57]Foreign speech. Foreign speech. Foreign speech.

[00:33:39]foreign.

[00:34:12]Please tokens.

[00:34:52]The coffee French Get things.

[00:36:18]It doesn't feel bad.

[00:36:28]for mech. Fore! Foreign! Foreign!

[00:37:28]because