Lizzie's Story

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Originally ran Feb. 5, 2009

 

Elizabeth “Lizzie” Velasquez had counted to 11 after taking four steps toward her political science class.

Her friend Roman Arispe, pre-mass communication sophomore, was quiet for a little while, and then said “27.”

They laugh.

Counting stares given by Texas State students on her way to class is a game played by Velasquez, communication studies sophomore, who has a rare and undiagnosed genetic condition. Only two other people worldwide are known to have the illness. One woman resides in Great Britain and the other in Austin.

Velasquez said she cannot gain weight and has zero percent body fat. Weighing 60 pounds, 19-year-old Velasquez said health complications left her right eye blind.

Taylor Smith, Velasquez’s friend, said people assume Velasquez is shy, but that is not the case.

“She’s very quirky and very quick witted,” said Smith, French freshman.

Velasquez might be small in stature, but she has big aspirations for motivational speaking.

“There are so many inspirational speakers who preach you shouldn’t care what people think and be happy with yourself,” Smith said. “Lizzie so far is the only person who has said something like that and I actually believed because of how she lives her life.”

Velasquez said Alison David, a lecturer in the department of communication studies, played a big part in preparing her for public speaking.

“She definitely has a presence about herself,” said David. “Physically, she’s so small, but when she opens her mouth she becomes bigger than life. She overcomes her physical stature with her voice and personality and she becomes big.”

David said Velasquez has the ability to poke fun at herself and “not many people can do that.” She said one of her most memorable moments with Velasquez came during a stereotype discussion in her interpersonal communication class.

“Lizzie said, ‘this happens to me all the time, because people think I’m anorexic and have an eating disorder or have some type of psychological problem because I’m so thin,’” David said. “She said she sometimes thinks she should be a spokesperson for a gym, on their posters or in a commercial, and she could be like, ‘hey, if you work out at this gym, you can be as thin as I am.’”

Velasquez appeared on the Maury Povich Show multiple times and has spoken on campus at Crosstalk and Phi Lambda events. She is scheduled to speak with Latinas Unidas April 16.

“It’s funny because after their (Phi Lambda) meeting, after I spoke, I got on Facebook, and so many of the girls in there were adding me and writing me novel messages saying that I really helped them and inspired them,” Velasquez said. “It’s just the greatest feeling knowing even if it’s just one person, I helped somebody.”

Velasquez’s latest goal is to take on a national stage. She is utilizing Facebook to raise awareness of her condition.

“I didn’t think it was going to be as big as it was,” Velasquez said. “I was talking to a friend, and she suggested writing letters to Oprah. It was just going to be people I knew. We were joking about making a group on Facebook, and I said I would do it but I figured I would take it down within two days with no big response.”

The group currently has more than 6,000 members.

“I’ve gotten e-mails from Canada, Malaysia and South America,” Velasquez said. “It’s gotten way bigger than I ever thought it was going to be. So now, I don’t know which way it is — if they’re just staring at me, or if it’s like ‘hey, it’s the girl from the group.’”

She said the feedback has been overwhelmingly, but not exclusively, positive.

“I have gotten some negative responses that have been very hurtful, but it’s expected when you put yourself out there,” she said.

Velasquez said because of her appearance, some people make assumptions rather than taking the time of getting to know her. She said she is not different, just much smaller.

“A lot of people think I don’t eat, but I eat all day,” she said. “I’ve had people come up to me and ask what eating disorder I had. When I’m with my parents, people have asked why they don’t feed me.”

She said another misconception is that she is fragile.

“Some people will want to give me a hug, but instead just touch me,” she said with a laugh. “I’m OK. I’m not going to break — I promise.”
Velasquez lives in the room directly above Arispe. He said she sometimes drops books on the floor to get his attention. Arispe said Lizzie has been his friend for two years and that she cracks jokes all the time, even if it highlights her differences.

Arispe said Velasquez is one’s stereotypical college girl. She is a self-admitted shopaholic, and is insistent on matching clothes, drinking Starbucks and watching “One Tree Hill.”

Arispe said he likes to mess up her hair sometimes to make her mad.

“There are people that cry whenever they see her pictures because they feel so sorry for her. The fact is she has the opposite attitude,” Smith said. “She told me one time if there was a pill or some form of reverse-liposuction to add body fat that she wouldn’t do it because she likes the way she is.”

Velasquez aspires to write a book about her life.

“I’m different, but I’m not,” she said. “Some people have insecurities about what they look like. God made you who you are for a reason, and it’s meant to be that way.”

 

Fast Forward

What is Lizzie doing now?

 

AR: Do you think people’s perception of you has changed since the article ran in February? Have you been treated any different?

LV: The biggest change I did see was the day the story was on stands. It was so funny to see people see me walking past them, look down at their paper, and then look up at me again and smile. In my head I kept thinking, ‘I’m so happy that one person is learning the truth about who I really am.’ Since then, some people have come up to me saying they read the article and how it inspired them, but I still feel like I need to do more to spread my story here on campus.

AR: I’ve heard you’re involved with a book and a documentary. Tell me about those.

LV: I got offered my first book deal this past May. A company called Motah approached me in April about doing a documentary about me for their Web site. From there we just decided to join forces together and help make a difference in young people’s lives. Their company is giving me the tools to fulfill all my dreams. They are helping me with the motivational speaking and are publishing my book, which will be out in the spring. The Discovery Health channel and TLC have both expressed interested in airing an hour documentary about my life on their networks. Right now we’re still working everything out but moving in the right direction.

AR: How has your health been since we last talked?

LV: Since we have last talked, my health has been fairly well. I’ve gotten a lot of colds here and there, the worst bringing me down for almost three weeks. Besides that, I’ve been doing whatever I can to make sure and stay healthy. With the H1N1 going around, I was convinced I was going to get it. Luckily (so far) I’ve stayed away from it.

AR: Have you learned any new information about your syndrome since we last talked?
LV: We haven’t found anything new about the syndrome yet. I’ve been so busy with school and doing pretty good health wise that we haven’t made the trip down to Dallas to see my genetic specialist. One thing we are looking forward to with this documentary airing on a national network is there may be different doctors who might have some answers for us. Again, I’m not looking for a cure per se because I would never want to change who I am, but a diagnosis would be nice.

AR: Did you ever get a response from Oprah?

LV: We are getting closer to Oprah. I’m so new to all of this TV media stuff, and I’m learning it’s all about networking. We are getting calls from different production companies wanting to work with us. Hopefully, once we start moving with all of that stuff it will lead to Oprah. I’m determined for it to happen though, no matter what.

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