Living With Progeria (30 Min Documentary) | BORN DIFFERENT

remember to look right here there that look like there I could talk to a person like joiner I just told her like you know you were born different much is who you are and she owns it I like to do youtube videos for my fans because I love her oh yes [Music] okay in her case like we don't put any fear into her or like explain what progeria is or even say the word progeria we just treat her like a normal 10 year old just try to give her the best life I like their world I'm about to run out of time so thank you she sees herself as being different there's days when she goes I wish I had hair I wish I look like everybody else but then she goes and says who needs hair anyways I have a bunch of eggs I like to do makeup I like to play Barbies I like to play on my phone and like carefully if we like to watch me like Frank my brother's sometimes I can't open up so I guess not like I'm basically like everything you know your cronies on my favorite that prison cycle me right there's being a meal is near kill she said she thinks you're cute yeah nothing Yogi's there [Laughter] it can be hard some days especially at night when everybody goes to sleep and you know I'm just thinking about the day is thankful for another day I guess [Music] Ayane has a rare aging disorder called progeria well her foods ready daddy already cut it up for you and everything it's obsolete everybody makes progeria it's what makes you age table girl and she just makes a lot of it so that's what makes her age faster we don't talk about life expectancy or any possibility if this could happen or that could happen to her I mean we just live day by day I mean anything can happen to anyone right exactly yeah [Music] right those eyebrows are lying fast I was very excited I can't make her open my present well in the beginning when we first rendered her Facebook it was just for you know giggles it was surprising how fast it grew [Music] which sounds like 14 million people on our Facebook and all her subscribers on YouTube I definitely think it's fair to describe a tally as a diva people have been asking is about it on his eye so the story about that is that stop she's very self-conscious about it but so surfers I basically like scar tissue for me I basically yeah I'm her puppet having a social media superstar 11 year old it's crazy especially when we're out in public you know a lot of people recognize her they say good things to her all the time they love all your videos there's constant comments of how she's inspirational and half and she was like stop her every time she hears those things it makes her really happy smile look at daddy maybe your tissue yeah are you really gonna tell me doing my nose oh you can do whatever you want for your birthday so so my favorite part is yeah why do I keep saying I guess it's just weird I never start to go down all right how do you look Dahlia do you think he's fat to say you like a little bit of a diva ah never louder than your ass damn they're cool they knew [Music] we went to the mall and we got some ice cream creamy chocolate syrup and we with the players I got a lunch and in ceará like my tears okay my favorite thing about being her mom is watching her grow and like seeing is how different she is from everyone just seeing how she takes on every day and just learning from her as well [Music] I could describe with ideas a while more yeah stubborn determined driven courageous crazy convenient to me when I want to do I can't rap okay they say the way that you could get bacteria is one eight million so it's pretty where we're brother and sister were both a fraternity you [Music] hi my name is Nikhil I'm 20 years old [Music] hi my name is amber I'm 12 years old I have progeria and my sisterís picture as well so we're the siblings with progeria progeria is an aging disease which causes the cells to malfunction so that's why we stay very small we don't even have a lot of hair we have a lot of problems with her bones and stuff just like old people we can't do some stuff because we aren't strong enough the impact on their life as they have to put a lot extra energy into it they get physiotherapy every day the diagnose was not when McHugh was born it was actually around 8 months after he was born he went to a children daycare center and that's where one of the doctors saw the difference between we heal and all the healthy ones we always thought about having two children well when he was born we question ourselves about should we take a second child it's very unlikely to have two children with progeria we know that happened before but it was a twin so it's the same cell he's a two different children with eight years of difference so we never thought about having a second child with progeria we always said whatever happened you can't turn back time so you have to live or what health has happened so you have to continue have to look to the future the aging goes eight to ten times faster than normal human beings the life expectancy is twelve years old I'm number 20 so I'm eight years past that that's not something that's in my mind anymore I'm not really thinking about it because I know it kills very good and I'm pretty good also we are taking medicines from America they say the life expectancy is two years I've shown normal age so that's a lot for someone with progeria [Music] [Music] when I'm Republic a lot of people used to stare at me because they didn't know who I was for me work which area was I don't go go-carting like every week I try to go once a month or something but it's quite physical so after like 15 minutes I get pain in my shoulder or my arms so I try to go as much as I can and what's physically possible for me go guarding I really like the adrenaline [Music] just as food the driving [Music] are all all fall watch a music videos on my iPad and being on social media my phone I like to dance but I can't do it and dance classes because I might hips and my knees hurt we are each other's best support because whenever has a question about preach or anything she can always come to me when we have some hard times those are the moments I never it feels really support very big fan crew they look through to disease they don't see the criteria part of me they see me and my personnel it's good to know that much will and have a lot of friends because I'm I'm sure they're gonna defend them they can I help them so it gives me good feeling we go bowling together and go to parties together and stuff and I can always Carol my friends we have a really good understanding about the condition of him because if we as a group of friends we talk a lot about it he's 20 years old I mean not everybody with his disease is going to be 20 he knows that as well we know that as well this we just gonna make the most of it acting both of them get a very much support from each other I'm very proud of both my children if I look with the condition they have and the way they stand in life and the way they make the best out of life I think we can both say we're very proud the old child ever Petrea was 26 so I'm gonna try and beat that record I want to try and reach it 30 no I would I would like to say to other people as - I'd have to enjoy their life as much as possible because even for them life's too short and you're just gonna make the most of it [Music] I don't let progeria define me that's not who I am I just happen to have this which makes me special in a way [Music] [Music] my name is Tiffany and I'm 41 years old zoomy and I am a business owner I was first diagnosed with progeria in my late 20s [Music] yoga helps me with many things um it helps maintain a healthy immune system for me which is very important it's important for me to keep flexible so I can with my life and go about my day I am approximately four feet five inches tall I'm losing my hair I do have a or text enosis but it's very mild with progeria I have experienced tooth not necessarily decay I have resorption of the root which basically means my roots are disintegrating and that causes me to have to have them removed so I don't have a lot of my own natural teeth anymore and I weigh about 58 pounds the fact that I am so little some people in the world think that they can take advantage of me I'll have my moment of sadness but I bounce back from that resilience is definitely a strength of mine I love to dance and I dance any chance I get I was hanging out with my friends I love to travel travel a lot there's a lot of live music in Columbus and a lot of arts and I love doing that [Music] my brother Chad he's no longer with us he also had progeria same as me that he had it a lot worse he broke his femur bone using his leg and he got an infection and then he died because his heart was so weak so but he was awesome and innocent very much when my brother died it really really opened my eyes to what the rest of my life was gonna be like so I met Tiffany through her brother Chad gooden's 10 years ago now where has it been a little bit longer since I've met Tiffany things haven't changed dramatically he seems to be taking good care of herself [Music] so the samples we would have taken like from Chad you know we took the skin biopsy we can grow them up in the lab actually do that here Tiffany's case is really rare so rare actually that we wound up asking Tiffany Chad and family if we could write this up in a medical journal because this had never been described previously so we're talking now down to one in 40 million one in 50 million people so incredibly rare the nice thing about the skin biopsy we took from Chad is that we could take those cells and grow them up in the lab and then keep those cells going forever so you lose forever four people are the typical progeria and fortunate have a very short life so many of them are dying in their teens 12 13 this is kind of the average of people talk about I think it took so long for you and Chad to get diagnosed because you you were so unique like how does my mom not have it but we got it from her I'm like she has to have it she does but when you take a look at hers hers seems so much milder compared to what you and Chad went through and then my job was trying to keep you as best as I can with are there medications or anything else that we could do to slow down things and keep myself active I have Qi businesses at this time I have a cleaning business and then I have a candle company called recycle Karma I take beer wine and liquor bottles and recycle them into candles basically what I do is I use soy wax and I melt it in my little melter here I pour out the wax put my scent in it I usually blend some smells or some people order specific things basically just mix it up pour it and then I sell it this was a beer and then somebody drank it and that's candles and I recycled and that's pretty much what I do with my candle I loved it and it turned it from a hobby into my little business it's my retirement plan that you d see me opening the door you like like you really oh yeah so mom when I went to dr. McBride today and was asking him about you and how I'm the oldest living person with it you are actually the oldest living person with it cuz you have it did you realize that I said so my mom is the oldest living person was perjurious he goes yeah tiffany is very active very um fun-loving she may be tiny but she's she can do anything just ask her when TIFF came along we knew there was something wrong she didn't have the de nose there was no defect that you could see yeah not like some of the kids are born with it you can tell it was a shock I had no idea none of us did yeah she was very outgoing personable and I'm very proud of her she's you know living on her own and she wants to do as much as she can on her own if she has any false at all she drives too fast to drive a NASCAR [Music] [Laughter] [Music] admire her ability to get back up again she has had some adversity in her life but she has never let any of that get her down she almost fees all that adversity in her life as a I don't know like an incentive to just go out and do better and be better that's who she really is I have been positive pretty much all my life and I don't know whatever I get it from I was born this way I've learned to be comfortable with who I am that helps me cope with being different when it comes to having new his knees I just my life but the positive attitude I get up every day happy at 16 years old you don't want to hear that you're aging faster but being an adult I like being different [Music] [Music] progeria is a rare aging disorder kids that have it normally passed away by the time they're 10 to 15 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 so I am obviously doing well that 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 they took doctors 16 years to formally diagnosed her at first they thought that was a hole in the heart but 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 prodding when I was born my teeth brought it out before they even came in they were rotted this picture actually my teeth are fake I do have the features of someone that has progeria and you can tell by looking at me I don't look dirty I look older as a kid I got it a lot that's hard when you're 15 years old and people thinking 30 that was rough but even when I was younger people think I'm 21 I was only 18 I can drink at an early age it was funny came in handy as a child with progeria Charlie found herself the target for many bullies I got he's so bad in middle school but a high school wasn't as bad I had a very wide group of friends I wouldn't say I was popular but it wasn't you know not popular it wasn't until Charlie left school that she met someone who she could really connect with Tony and I met on a dating today I think I loved him the moment I met him Tony is legally blind and he and Charlie bonded immediately 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 18 months into their relationship the pair decided to get married my wedding date was perfect it was everything I could dream of walking down the aisle and seeing Tony I was so nervous but still nervous but as soon as I got to him I was like this is it my whole life's about to change it was the happiest day of my [Music] 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 gonna continue to go through because this world is very cruel and the world will not change for one person so this is my engagement iPad instead of a ring this is what I asked for you have to stay positive for yourself and she she's like a bright light for other people makes people look to the bright side of what they've been dealt with but being Shelly changed my perspective on a lot of things one in a million is the best way to describe as far as how long I'm gonna live no one knows there is going to be a point where my life will be shortened and I know that 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 a half somebody who loves me if I could tell anybody one thing about progeria it would be [Music] it's not always negative if you can see the positive in it you'll have a great life

Channel: truly

Views: 3,413,447

Keywords: amazing news, amazing stories, amazing story, amazing, barcroft media, barcroft tv, barcroft, documentary, real life, 2019, progeria, 245465, june 2019, adalia rose, youtuber, Tiffany Wedekind, Challi Muguira, born different, ageing, medical condition, rare, genetic condition, genetic disorder, aging symptoms, progeria research, premature aging, progeria treatment, Amber Vandeweert, medical documentary, Michiel Vandeweert, progeria survivor

Id: 7TLS4b9skdA

Length: 30min 31sec (1831 seconds)

Published: Fri Jun 28 2019