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.
More from TODAY.com
Derek Jeter tells TODAY: ‘I consider myself young again’
- Aretha Franklin covers Adele's 'Rolling in the Deep': Who did it best?
- CDC confirms first Ebola case in U.S.
- Joan Lunden opens up about 'very complicated' breast cancer battle
- 'Bachelorette' Ashley Hebert welcomes baby boy with J.P. Rosenbaum
- Derek Jeter tells TODAY: ‘I consider myself young again’
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.
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.
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.
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.
“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.
More remarkable health stories
To save his life, he gave up his face
Diagnosed with a rare cancer, Donnie Fritts faced an agonizing choice: Die with his face, or live without it. Today, remov...
- Bionic heart is keeping bride, 22, alive
- He bumped his knee — and nearly died from it
- Chimp victim could get face, hand transplants
- ‘Miracle’ boy is OK after 15 minutes underwater
- To save his life, he gave up his face
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.
© 2013 NBCNews.com Reprints