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Video: Woman who can’t gain weight baffles doctors

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    >>> who has never weighed more than 64 pounds. litt lily suffers from a rare medical condition that prevents her from gaining weight. first we get her story from nbc's janet shamlian .

    >> reporter: on the campus of texas state university , she is just another college senior palling around with friends. and yet weighing just 61 pounds it's hard not to notice she is very different. how does the public treat you?

    >> it's hard. they look at me like i'm a monst monster. i like to say that wherever i go it's like i walk with an audience because people are constantly looking at me.

    >> reporter: the truth is lizzie cannot gain weight.

    >> thank you.

    >> reporter: despite consuming as many as 5,000 calories a day, the 21-year-old weighs the same as an average 8-year-old.

    >> i would say an average breakfast would be a breakfast taco or two and then after that maybe like 30 minutes , an hour later, i'm starting to get hungry again, so i'll snack on chips or cookies or sweets usually. i'm a big junk food eater.

    >> i think you have an issue with realizing what my size is.

    >> reporter: her condition is a medical mystery but doctors say she may have a form of neonatal system that can cause fat loss and accelerated aging . lizzie is also blind in one eye. she was born prematurely weighing under 3 pounds . her mom dressed her in clothes made for dolls. could this condition claim your life?

    >> no, it couldn't. and i don't like to think about it. i live every day to the fullest. i live it as it's my life because with the syndrome everything is unknown.

    >> reporter: the velasquezes are a close family. they have raised all their children to be confident and proud. what do you think of the woman she's turned out to be?

    >> she's outstanding. she's surpassed everything that i thought she would be. tivational speaker when she graduates, sharing her story of overcoming obstacles. for "today," janet shamlian , nbc news, austin.

    >>> and lizzie velasquez is here with us exclusively along with her parents rita and lupe . i have to ask you, rita , first you watched this with tears in your eyes. how was it possible that you raised this girl who says people stare at her all the time, how is it possible you raised a girl who would sit here on this couch in front of millions of people and let people look at her with this confidence?

    >> i don't know. i just treated her as a normal child. i didn't treat her any differently. she was just our daughter. we just raised her how we knew how to do it and that's what we did.

    >> lupe ?

    >> all i can say, she was brought into this world with a purpose and we're all learning from her. and we get our strength from her. and so all we can do is support her and be there for her.

    >> in fact, lizzie , i understand that you convinced them to be here with you. you had to talk them into it.

    >> they support me in anything i do. so no matter what it is, if i wanted to jump off a building , i'm sure they would probably try not to tell me not to do it but i'm sure they'll support me. as long as i get my story out there, they support me 100%.

    >> get your story out there. this is the mission.

    >> yes, definitely. every single day my mission is to get my story out there.

    >> why?

    >> because people need to know that no matter what you look like or what you go through in your life, you don't need to be judged because of your outer appearance and you don't need to let that stop you. you don't need to let the negativity hold you back or keep you from living your life the way you want.

    >> and how did you do that, lizzie ? how did you prevent the negativity from tearing you down?

    >> i mean, honestly, i'm human. so, of course some of the negativity is going to hurt and it's going to upset me, but my dad always tells me i can only have my one sad cry and then you have to move on and look at the positive sides of things and i have to give all that credit to my parents and to my family because they raised me as if i was nothing different. so i have to -- when i have to learn from the outside world that, yes, you are different. my mindset is still you're normal. so i'm kind of just like fight ing to prove i'm normal even though i'm small.

    >> so you're teaching other people essentially?

    >> yes.

    >> you have a feisty daughter.

    >> yes.

    >> what did you say to her?

    >> every day she would -- there were days she had bad days and she would complain about how she looked or how thin she was. i said, there's always others that are worse, that have more struggles than you do. just be grateful and thankful for what you have, your health, and that you are doing fine and we always were trying to be positive with her. we never told her anything different. we never treated her differently. it was always, you can do whatever you want to do, put your mind to it and that's it. just set goals. and she's met almost all her goals. she has accomplished just to get there.

    >> did eating 5,000 calories a day require to have you weigh 60 pounds?

    >> no, no, no. honestly, i would never actually look at a calorie in my life just because i've never had to.

    >> why do you eat so much, do you think, compared to other people?

    >> i get hungry really quickly and i don't eat a lot of big meals. i eat a lot of small meals, so i get full kind of fast. so i just kind of snack throughout the day and i, of course, have my breakfast, lunch and dinner, but i don't have a required amount of food.

    >> has this always been the case when she was younger?

    >> yes. she could eat anything. that's what it is. she eats all day long, just small meals, snacking in between, but it's never like a full meal that she sits complete. it's small meals throughout the day and she does get hungry a lot. she always is snacking which is hard for us. it's hard to keep that kind of food in the house since she can eat whatever she wants.

    >> meantime now your daughter has written a book.

    >> yes.

    >> she has written a book to help other people understand more deeply. your daughter has written a book.

    >> when she was in middle school , she said i'm going to grow up, be an inspirational people, i'm going to write a book. i'm not even going to dedicate the book to you. you're not believing in me. and here she is accomplish her mission and when i read the manuscript, i was crying, thinking back to when she was a baby, and i hadn't read it at all because it was a collaboration between mom and daughter and, you know, i wanted to wait for the finished product. and i just sat there laughing and crying. it was really emotional. i'm just so proud of her, the strength she has and the courage and determination.

    >> thank you for joining us.

    >> thank you very much.

    >> rita and lupe , thank you for raising such an exceptional daughter. and the book is called " lizzie beautiful." and if you want more information about it go to our website

By
TODAY contributor
updated 7/6/2010 11:18:23 AM ET 2010-07-06T15:18:23

It’s not easy to go through life leading a parade of people staring at you, whispering behind your back and wondering what’s wrong with you when, from your standpoint, nothing is wrong at all.

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But that’s how it’s always been for Lizzie Velasquez, a bright and bubbly college student with a rare disorder that makes it impossible for her to gain weight, no matter how much she eats.

“They look at me like I’m a monster. Wherever I go, it’s like I walk with an audience because people are constantly looking at me,” Velasquez, 21, told TODAY’s Ann Curry Tuesday in New York.

Rare condition
Velasquez was just 2 pounds when she was born about eight weeks premature. She grew slowly and has no body fat, so that today she weighs barely 61 pounds — about as much as an average 8-year-old.

TODAY
Lizzie Velasquez appeared on TODAY with her father, Lupe, and mother, Rita.

Doctors say she has many symptoms of neonatal progeroid syndrome, a rare disorder characterized by premature aging and an extreme lack of fat. One of just three to six people in the entire world with her specific symptoms, Velasquez has a triangular face and a sharp, beaklike nose. She also has lost vision in her right eye.

But none of that has stopped her from becoming a student at Texas State University in her hometown of Austin, hanging with her friends, and living a normal life. In fact, it’s spurred her on to become a motivational speaker and to write a book, “Lizzie Beautiful: The Lizzie Velasquez Story,” which is being released later this month.

“Every single day my mission is to get my story out there. People need to know that no matter what you look like or what you go through in your life, you don’t need to be judged because of your outer appearance, and you don’t need to let that stop you. You don’t need to let the negativity hold you back or keep you from living the life you want,” Velasquez said as her parents looked at her with pride.

Staying positive
Obviously, she said, it hurts to be stared at and to read online comments from people accusing her of being anorexic when she actually eats some 5,000 calories a day.

“I’m human. So, of course, some of the negativity is going to hurt and it’s going to upset me,” Velasquez said. “But my dad always tells me I could only have my one sad cry and then you have to move on and look at the positive side of things. I have to give all of that credit to my parents, and to my family, because they raised me as if I was nothing different. When I actually learned from the outside world that, yes, you are different, my mind-set is still, ‘You’re normal.’ ”

Her mother, Rita Velasquez, told Curry that her daughter struggled sometimes to cope with her condition.

“She had bad days and she would complain about how she looked or how thin she was. I said, ‘You know, there’s all these others that are worse, that have more struggles than you do. Be grateful and thankful for what you have — your health — and you are doing fine,’ ” Rita said.

TODAY
Lizzie Velasquez weighed only 2 pounds at birth, but her organs were all developed. Her mother dressed her in doll’s clothes.

“We always were trying to be positive with her,” she added. “We never treated her differently. It was always, ‘You can do whatever you want to do. Put your mind to it, and that’s it. Set goals.’ She met almost all her goals.”

Her father, Lupe Velasquez, recalled Lizzie telling him about her aspirations and his reaction to it.

“When she was in middle school, she said, ‘I’m going to be an inspirational speaker. I’m going to write a book.’ We said, ‘Well, you better think of something to fall back on,’ ” Lupe said with a smile. “She said, ‘You know what? I’m not even going to dedicate the book to you. You’re not believing in me.’ Here she is, accomplishing her mission.”

Struggles and triumphs
When Lizzie was a baby, Rita Velasquez dressed her daughter in doll’s clothes. Today, Velasquez loves shopping with her friends, but has difficulty finding clothes small enough for her slight frame.

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Rita also wrote letters to her daughter, putting on paper the things she couldn’t say. When Lizzie went to college, her mother put the letters in her suitcase, where Velasquez found them and read them.

The edited letters form the first part of Velasquez’s book. The second part is about her own daily struggles and triumphs, beginning in middle school.

Lupe read the book when it was finished.

“All I can say is she was brought into this world with a purpose. We are all learning from her. We get our strength from her. All we can do is support her and be there for her,” he said. “I just sat there laughing and crying. It was just really emotional. I’m just so proud of the strength she has and the courage and determination.”

Said her mom: “She’s outstanding. She’s surpassed everything that I thought she would be.”

For more informaton about Lizzie Velasquez and her book, click here.

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