The World's Smallest People (Primordial Dwarf Documentary) | Our Life

There are nearly 200 types of dwarfism, and the smallest, most proportionate dwarfs are called primordials. His arms were like my fingers. I mean, just the proportion itself. I mean, you're looking at this child, but everything is just miniaturized. His toes, you're like, how can toes be this little? The questions I asked the doctor were, can she have a baby? You know, little girl things that all girls want to know. And they said to me, with the size that she'll continue to stay, if she would get pregnant, it would probably kill her. What did you do at school today? Homework. Nothing? Homework. You got homework? Can you make a piggy noise? You do? Can you make a horse noise? Can you make a dog noise? Can you make a cow's noise? She's 16 years old. 16 years old, 16 pounds, and a little bit over two feet. Bree is one of the smallest primordial dwarfs in the world. Like all primordials, her heart, lungs and other organs are completely proportionate inside her tiny body. She was delivered at 33 weeks by C-section. Just a miniature little person. I pounded 12 ounces, 800 grams and 12.5 inches long. They really leaned towards putting her in an institution and not bringing her home. Why did you not think that that was the right thing to do? Because I was her mother and I loved her regardless. Regardless of how sick she was or what she could or couldn't do. And I still didn't feel like they knew everything. Primordial means fundamental, existing at or from the beginning. Primordial dwarfs are so rare that most doctors have never seen one in their lifetime. No one knows what recessive gene or chromosome causes the syndrome. Its origins are predestined from the first moments in the womb. Consequently, they are born and often live, shrouded in mystery. What's it like to be a little person? Well, I just think it's good. Do you ever wish you were a little bit taller? Yeah, a little, when I was hot. Primordial dwarfs are characterised by severely restricted growth, proportionate limbs and high-pitched squeaky voices. Most die by the time they are 30. There is no cure and rarely do they grow beyond 3 foot 6 inches. My family all were certain that she would get bigger. They were in denial that she was going to stay small and that she would be little forever. I mean, they believed that eventually she'd catch up. She may be smaller than most people, but she would catch up to a normal height. And how did you feel at this moment in your life? Pretty isolated and overwhelmed. You feel like you failed, you know, and you're trying to pick that up. You know, you're trying to make the best of something that you're not sure what that is. I suppose when we have our babies, we're primed for perfection, aren't we? Society is. For the family they are born into, the questions are many. How did this happen? What problems will they face medically and socially? Can they have children? And how long will they live? The answers that the doctors give is that they just don't know. Hi, Danny. Hi. Lovely to see you. Yes. This is Steve. Hi, Steve. Hi, Danny. Hi. Good to meet you. And this is Mark. Hi, Danny. Hi. Nice to meet you. How was your day at school? Good. The first time I ever heard Dwarf mentioned was when he was eight months old. And that was after they did, I had him hospitalized for a week. The pediatrician said, well, we've got to figure out what's going on here. And they did chromosome studies on him and hormone studies on him and everything. And everything pretty much came out normal. And they said, the words they used is, this is his constitution. This is the way he's meant to be. He's a dwarf. And I can remember not even being able to say the word. I used to practice at home, dwarf. Dwarfism. He's a dwarf. Because I couldn't say it. I could not say it. I said, this is so... I remember trying to tell my in-laws and my family and friends, you know, well, he's a dwarf. And I couldn't get the words out. Could not get the words out. Because all I could think of is Snow White and the Seven Dwarfs. That's all I could think of. Kyle is Danny's best friend. At 14, he's two years younger than Danny. See? That's the hardest thing to do. Everyone's tried that. No one can ever do that. I mean, that takes, like, incredible upper body strength. Because I've been climbing so many, like, times. Up and down, up and down, up and down. For my entire life, I had to climb up things to get what I want. What about when he was, say, five to nine? What were the challenges there? He was fearless. You know, you would come into the kitchen and literally, he would be on top of the refrigerator to get something. And you'd be like, Dan, what are you doing? How did you get up there in the first place and, you know, get down? After a while, we kind of got used to it and it wasn't... But then we'd go to school and these teachers would be like, he's climbing the bookcases. See, that's what always scared me. Remember the time he did the bureau upstairs? Him and Katie. Yeah. And they pulled it over. Pulled the drawers out and then, like, tried to walk up, like, it's steps. And the drawer, the whole bureau started to come over. And you think, well, if it had come over on him, that might be it. Oh, that's a point. Come on, guys, you've got to play better. Primordial dwarfs are often not diagnosed until they're five years old. Until then, many of them will have received growth hormone in the mistaken belief that this will make them taller. Does it harm him to put growth hormone into him? Well, there can certainly be side effects to growth hormone. So, you could get enlarged hearts, heart muscles, and things like that. I mean, so why even take a chance? Why go down that road? I mean... And I'll tell you, it was very... This poor, poor little kid. I had to give him a needle every day. Yeah, that's when you cried. Remember we were talking about when you would cry? Oh, my God. I did. Because he would... I'd be crying. He would beg. He'd be crying. He would beg, please don't give it to me. Please don't do this, Mommy. Don't, no, don't do it. Don't, I don't want it, I don't want it, I don't want it. Please don't. And then you'd have to give it to him anyway. It was horrible. Oh, I missed. The growth hormone had no effect on Danny. Damn it, I can't get it. You know, it was such a trial by error. We got absolutely conflicting opinions on what they thought. And that's, again, part of the genesis of me realizing these people don't know everything. You know, they're not God. They're not... Not that they're bad people, but, you know, their offering their opinion doesn't make it true. Oh, my God. Oh, ****. Mom. Back up. We had actually been told that you had a 20% chance of having another child that would be affected in any kind of a genetic disorder. But when I got pregnant with Bradley, Bridget wasn't officially diagnosed with the dwarfism that she has. You pray for him to be big, and you pray for him to be little. Because if they're little, then Bridget has someone to be with. And if they're big, then their lives are so much easier. So it's like a double-edged sword. What's it like being a primordial dwarf? Cool. Do you get on very well with your sister Bree? She's mean. She seems very sweet. She's mean to me. Is he much stronger than you? Um, yeah. He knocked me over when he was a baby. Do you feel responsible for him? Yeah. So when you walk along with him, what are you thinking? I'm thinking there's hope in him. Because if I have kids, then I want to help them too. To make sure they're not getting trouble. How are you feeling today? Not good. And why is that? I don't know why. Is it because we're here? Did you have a good day at school? What happened at school? Nothing. When she comes home on the bus crying because somebody called her a baby, or a supposed friend will say, you're too small to do that, you can't do that, those are really the hard things. And then we just have to sit and hug and, you know, it's going to be okay, Hannah. When Hannah was adopted by Jackie at four months, she had been labelled as a failure-to-thrive baby. At two years, she weighed just nine pounds. At four years, she was diagnosed as a primordial dwarf. I felt alone. I didn't know that there was over 200 types of dwarfisms or what's going to happen with the particular syndrome that she had. I really just felt alone. Although I had loved ones around me, I had my husband, my family, I still felt incredibly alone because I'm her mom and I don't know what I'm dealing with. So Hannah, we were saying, you were telling us, tell us how tall you are. Nothing. You're nothing? Why do you say you're nothing? Nothing. She knows she's different, yes. You know, on her tenth birthday, we had her birthday party down at the country inn and it was poolside and I invited ten little girls of her friends from school, or nine of them, she'd be the tenth one, and what I saw was all the average-sized children in the pool all about the same height in a circle and Hannah knew she couldn't be there because she'd be underwater. So she would sit out when the other children were doing the activities that normal ten-year-old kids did and it broke my heart. I want to be big. Do you? And have bigger teeth. Show us your teeth. What do you think about your teeth? I hate them. There are a lot of times where she'll say, I want to be tall like my friends and then I would just say, this is the way you're going to be. You're going to be small and it's going to be life for you. It's going to be hard a lot of times for a lot of things but what do you say? Dad, I wish you'd just talk me through it and not do this. For primordial dwarfs, the transition to independence as an adult has to be taken step by step. What do you think you'll be doing in the next few years? Hopefully finishing my college degree, driving of course, getting a license and, you know, getting a job. I've only had maybe two people out of the whole time I've known her think that she was my daughter and that was one person that was walking in the store and then there was a lady at a restaurant. What did they say to you? Well, the lady at the restaurant, we told Kristen that she was my daughter because kids ate for free that day and we didn't have enough money so we just decided to tell a little fib. We do that quite a bit. It was her idea though, it wasn't mine. It was her idea, which I was really surprised. So, Kristen, if you have to pretend to be a kid, how old do you say you are? When they look at me, sometimes they think I'm like six or seven years old maybe. You know, because that's, you know, a normal height for like them or like a three or four year old sometimes. Kristen's older brother Kevin was also a primordial dwarf. He died 18 months ago. What did your brother die of? Aneurysm. A brain aneurysm? Yeah. And how old was he? I think he was 24. Actually, I thought our house was haunted. Like a couple days after he died, I thought I was being watched and every time I'd fall asleep on one leg, I'd feel somebody tugging on my, on the blanket. And I would always hear music coming from next door and could see an apparition or something running up the stairs. And so we really thought that our house was haunted. What do you miss most about him? Just the essence of him. He would, as old as he was, he would come up to me and say, he'd say, come here, Ma, and he'd put his arms up and he'd give me a hug. He says, we both need a hug, or he needs a hug, or I need a hug. He was never embarrassed to do that. And the night he died, he gave me a back rub. Kristen found him on the sidewalk. He was like looking at the stars, kind of like leaning back, looking at the stars, and I thought he was playing a prank on me because he does that now and again. And when I found him, he wasn't breathing. We knew we could get him to emergency quicker than calling 911. So I drove, Mike held him and ran in with him, and then they had to put him into a medically induced coma. He had beautiful eyes, and those eyes would say, why didn't you let me go? So I said to him, if what you see is better than what you have here on Earth, I'll let you go. And we turned the machine off, and he was gone within, what, 20 seconds, 25 seconds. One third of primordial dwarfs die at birth, one third in their childhood, and the rest rarely live longer than their late 20s. How is Kristen without him? I don't know. She right now thinks he's haunted the house. Did she tell you? Because all of a sudden, this kid who never, who used to love to sleep in the dark, the darker it could be, the better she liked it, was sleeping with a light on in her bedroom. I said, honey, if he's back, because his spirit's in the house, I said, he's not back to hurt you. Are you worried about Kristen? Yeah. Being a child is safe, and growing up is risky. You saw Dan's room. He has stuffed animals on his bed. He has toys around that you would say were more age-appropriate to someone who's between the ages of 6 and 9, let's say, than for someone who's 16. And a lot of that is that it's safe. It's safe to be 6 years old. It's safe to not grow up. Do you think he'll still be living with you when he's 25, 30? 30, I don't know. 25, I would say almost certainly. You know, I think there will come a day when Dan wants independence. Mm-hmm, I know. Well, yeah, I mean, you can never say never. I know, but it would be hard to... At some point, I think he's going to... 25, I would bet yes. 30, I think now we're talking about the point where he may decide that he wants to give it a try on his own. He's already gone through the boys his own age, and they have, in fact, kind of peeled off. So now he hangs with a bunch of boys who are 2 years younger than him. What happens when they hit 17, 18, and they want to go on to other things, you know? I mean, Dan can't keep hanging out with 14-year-old kids until he's 30. Thank you. Announcements. For our Memorial Day ceremony, all students should report to period 4 today for attendance. We will announce when teachers and students should report to the platform area. Teachers, please escort your students. Okay, now time for the pledge. I pledge allegiance to the flag of the United States of America, and to the republic for which it stands, one nation under God, indivisible, with liberty and justice for all. When I first met him, he was like the size of Tom Thumb. My job is to make sure that he gets on and off the bus safely, and I make sure that he doesn't get trampled, and he's safe during the day. Danny's constitution is such that his body has to work much harder, and he tires easily. Every morning at school, he's allowed a one-hour nap. I've known Danny ever since he was, you know, well, when he went to grammar school, I remember him in middle school. We used to all get off the bus. He couldn't even get on the bus. We used to have to pick him up and put him on the bus. So I've known him for some time. You know, he's got to walk twice as fast as everybody, but everybody acknowledges him. They move. They see him. He gets along with everyone. Everyone loves him. He can be fresh. He can get mad just like anyone else, which is kind of hard to get mad at him because when he does get mad, he's pretty funny. Has he got a temper? He has a temper. He got in trouble the other day. He just got suspended for swearing at a teacher. All right, we're going to wake him up. Wait a minute. I didn't do a note. We're going to wake him up anyway because it's time for him to get up. Okay. If he's not snoring, go ahead. You go see if he's not snoring. Come on, bud. It's time to get up. Hello. Chicken patty. Right, chicken patty and fries. This is pudding. Danny goes to the canteen ahead of his classmates to avoid being crushed. I got it. I hear you got into trouble yesterday. Did you have a suspension? Yeah. What's that for? I let my mouth run again. What? I let my mouth run. You let your mouth run? What did you say? I don't want to say it because it's a bad word. I can't say it. You said a bad word about somebody? What, your aide? Uh-huh. She makes you mad? Sometimes. So what did you say, Danny? She heard you and she reported you? Yeah. Now why did you say that? Would you like to be more independent? Do you need her? Oh. Do you feel a bit trapped? Because you kind of need her, but you'd like her to be a long way away. Yeah. Certainly the one thing that's the toughest part of it to handle is thinking about the things that he's going to have to go through later. You know, there's going to be a day when Dan, you know, wakes up in the morning and probably says to himself, you know, where am I going to find a wife or a girlfriend or someone to marry? And just thinking about that, him having to go through that, that's tough. This way. We were all outside in the hot sun. Yeah. 17. Do it, do it. Hell. Now what do you want to be when you grow up? A basketball coach. You want to be a basketball coach? For our home team. And me. Do you think you'll be able to do that? Yeah. Do you not need to be terribly tall to be a basketball coach? No. I can do whatever I want. I want to have kids. How many kids would you like to have? I really want to have three. And then I'm going to adopt one. So that we can walk properly. Try it one more time. Ready? Two, three. Right hip up. Tuck. Almost. Not bad. That was better. Let's let Logan have a quick turn. And have they both been through puberty? Both of them. Mm-hmm. Yes. Yes, and that was an experience in itself. Ballet isn't so bad. Boys, they're so much easier. But this was very interesting. And she was probably better prepared than the adults. Did she know that she would have a period? She did. She knew she would have a period. She was very prepared in that aspect. And she knew that she'd be crabby and all of that. How old was Bridget when she? She was just 15. She actually has to have enough body fat. Now we plateaued at that 27 and a half inches. And she put on three more pounds. So I guess that was just enough body fat to send her over to be able to have a menses. So let's start at the beginning. Who will you marry in order to have your kids? I don't know. Just a regular guy, probably. A regular guy? A tall guy or a short guy? Well, maybe a very tall. Maybe like my age. Do you think you'll find him in your hometown? I hope. If I found one, I really like, then I would go with that. No primordial dwarf has ever got pregnant or fathered a child. None has ever got married. There's no research to prove whether their babies will be primordial dwarfs or of average size. And doctors fear that delivering the baby would be fatal. How tall were your parents? My mother was 5 foot 7, 5 foot 7 and a half. And my father was 6 foot 4. Yes, yes. My father was red hair. Most primordials don't reach the age of 30. But Sharon has managed to get to the remarkable age of 43 and is the oldest primordial dwarf in the USA. Sharon was born into an isolated farming community in Illinois in 1961. She wasn't diagnosed for many years and didn't attend school. The authorities claiming she would slide off the school bus seats. I spent most of my days alone because Linda would be at school, you know, during the day time. And who is Linda? Linda is my half sister. I joke, she's my sister and a half. I was only 8 and a half. But I was excited and happy. I wanted a little brother or sister. Of course I wasn't for sure about wanting one that tiny. But it was like having a doll. And I pushed around in a carriage. It was a unique experience. How long did you wear doll's clothes for? Probably till I was 20 or so. Our mother was a very beautiful woman inside and out. And a hard worker. I credit her with Sharon's survival. What was life like for you as a teenager? The kids would buy more often. And bring it out in the garden. And they'd wave and keep going. And on their bicycles. At 15, 16 they could drive. They'd drive by, wave. So I suppose it was no normal in that respect. Yes, I envy her. She's not a nervous person. And I'm very nervous. She doesn't get upset over hardly anything. And I can get upset. But she has a good outlook on life. And she always sees in other people the good things. Hannah is going through little early puberty things now. And sometimes she'll say that she doesn't like being who she is. She doesn't like being tiny. She wants to be like her friends. So she can hold her hands and run and ride the same size bike. And do all the things that they're doing. The families of primordial dwarfs are often very isolated. And they use the internet to communicate. Jackie is taking Hannah to meet Sharon. To help her feel more positive about her life as a very small person. Sharon's probably feeling good about herself. And she's been through so much. I need to know things like, you seem like you really like yourself. That you're really happy with yourself. When did that change? How do you get to that point? Yes, she is very tiny. She's a primordial dwarf. And they are the tiniest dwarfs in the world that are proportioned. There's only a handful of Hannah's type in the world. These kids are in this huge world. And this huge world is not going to shrink for them. So they have to adapt somehow to this world. But how can you live like that? How can you be happy that way? The meeting is important for Sharon too. It's been five years since she's seen another primordial dwarf like herself. Hello. Hannah. Nice to meet you. Nice jacket. Thank you. Hi Hannah. Beautiful. I have to have body focus. Because I'm an alien. This is my room. Nice and easy. This is my new computer. That's my old computer. And sometimes this one doesn't work. So I use the old computer. I used to wear that a long time ago. Maybe she's getting claustrophobic. You've got a lot of stuff in there, Sharon. Yep. Got my... Connection. Sometimes she'll lick your nose. But she doesn't lick your cheek or anything. But she's kind of hot. Linda, what's it like to see Hannah? It's almost like seeing my sister when she was Hannah's age. Same blonde hair. Same voice. Does it take you back? Yeah, it does. It really does. You just want to scoop Hannah up and hug her. Though she's got larger arms than what Sharon did. Sharon's got smaller arms. I call them toothpick arms. They were so skinny. Hannah's a little bit bigger that way. Mine's shorter. Well, you're just 10. She's an adult, so you have a little room to grow. You were going to ask Sharon a question. What were you going to ask her? Are you happy being little? Yeah, I'm happy. Most days. There's always some days when something goes wrong. I want so badly for Hannah to be normal. To be like everybody else. And is that wrong to want so much? Just like with my other children, I want them to do everything this world has to offer. Do you think she'll be able to achieve that? Yes, I do, and I'm going to keep saying that because I just really believe in being positive and positive words have to come out. She has to hear all the positive that's out there. If I can't give that to her, she will have nothing. And she'll have nothing to fall back on her, no memory that goes around and around, that tape recorder in your head. She won't have that unless we keep saying to her, you can, you can, you can. Do you think you're facing the toughest years now? Oh, I know we are. Yeah, from here on out, I think it probably gets tougher. From now till probably coming up to 30 is going to be very difficult. People grow into adulthood, you get a lot of self-worth from working and earning your own money, and it's very, very important, and we want to let him experience that. But it's also, you know, this is the time when you disengage from your parents and develop your own relationships, and I just don't know how that's going to go for him. Right. Last Christmas, Danny went to his first dance. That's Desiree. What did it feel like to go out with Desiree? Pretty good, actually. You know, she was one of the only... Because I asked another girl, and she couldn't go. And Desiree came up to me and said, oh, I'll go with you. She's a junior. She's a grade ahead of me. Is that one of the happiest days of your life? Yeah. Why did that make you feel happy? No, because I actually went out with someone who appreciated that I am the same as everyone else. The first time, the girl asked me out, and first time, the girl felt that, you know, she could go out with me. I was really, really happy. Do you think you'll go out with her again? I don't know. No, it depends. If there's another dance. People who grow up with completely normal lives can be devastated if somebody they love leaves them, or if somebody does something that hurts them, or if they don't get something that they've been dreaming about all their life. So, you know, what you have with Dan is you have a certainty that that's going to happen. There's almost a certainty that at some point in his life he's going to be very disappointed in love. He's going to be told that there's some goal that he wants to achieve that he's simply not going to be able to achieve because of the way he was born. At some point, it's going to happen. Some of the friends will start drinking or going out nights, and he'll want to stay out until 2 o'clock in the morning. Why can't I? Everyone else who's 18 or 19 does it. And what do you say? Notice how I'm doing it with both hands. It's called push and pull. I mean, one statistic that scares the heck out of me is the suicide rate among male dwarfs over the age of 18. It's high. It's about lack of power, lack of control, and men are so wrapped up in that. And his foot went like this, boom! It went straight back down. Good job, Brad! Good job! Yeah! Go, go, go, go! Christie's marriage ended in divorce soon after Bradley was born. It was such a hard time in my life. You know, and still you look back and wonder if you did everything like you should have. What could you have done differently? I don't think that I probably could have. But you still struggle with that. You still struggle. But it's the everyday struggles, I think, that are probably the hardest. And I think that's because it's ongoing. So I'll probably, in 10 years, look back and think the same thing, you know. Do you think he'll get married? I don't know. You know, in a perfect world, he would find Hannah, and him would get along perfectly, and they'd be perfectly matched, and they could live in the little apartment above her and be safe and live a productive life and everything. I started thinking about that when he was born. I was like, what? And then I was like, scale back, Monica. Just think about tomorrow, preschool. Don't think about it. Danny is now at high school, taking his senior exams. Do you think you'll live a long life? I don't know, actually. I'm not certain how long I'll live, but I'll make do with what I can. Have the doctors given you any idea how long you might live? No. They don't know, I don't think. Anyone really knows how long. How long would you like to live? I don't know. What sounds like a good age? At least, like, 70, I think, for me. Just like the rest of us? Yes. Oh, that's great. That sounds great.