“I can’t gain weight”, said a Texas State University senior, Lizzie Velasquez, in an interview with ABC News.
The eldest of three children, Lizzie, who suffers from neonatal progeroid syndrome, was brought up “to be completely normal”. She was never told that she was different from other children, except that her parents told her that she “was smaller than the other kids but just like them” in every other way.
Neonatal progeroid syndrome is the “premature aging syndrome in which features of human aging are apparent at birth, including larger than normal sized head; prominent scalp veins; triangular, aged face; wrinkled skin; and decreased fat under the skin.” However, it is slightly different from the Hutchinson–Gilford progeria syndrome (HGPS) (more commonly called progeria).
This syndrome, which is known to affect only two others worldwide, has made her life a study in contradictions. She eats whatever she wants, yet cannot move a weigh scale past 60 or so pounds. “They have very little muscle mass, the limbs look very thin, spindly, and many of these children, they die very early in life.” However, Lizzie survived, and that in itself is believed by doctors to be a medical marvel.
Bullied heavily in school, Velasquez revealed in her interviews how the elementary school days were the worst of her life. Treated like “some sort of monster,” she said, when she recalled her first day at kindergarten, “I never told anyone how bad I was being picked on because I was embarrassed. When I would take a bath at night, that’s when I would cry.”
Her parents were warned, before she was born, that their daughter might not survive because of the very low content of amniotic fluid around her, in her mother’s womb. However, Lizzie grew up, facing odds head on and pursued a Majors in Communications, and now has a career as a motivational speaker and as an author of two books.
Scientists who have been studying Lizzie for more than ten years, are of the belief that they are closing in on the gene that causes her condition, which may one day lead to treatments and a cure. Lizzie, being the oldest person alive with NPS, offers hope to others who suffer and she helps those who need it, to understand how people can survive well into adulthood.
One major turning point in her life came, when Velasquez came across a video, at the age of 15, that had a very familiar face on it. It was her photo. And the video was titled ‘The Most Ugly Woman in the World’. It had over four million hits, and comments that added to the cyber-bullying, included some such as : Her parents should have aborted her, she is an alien among humans, she ought to commit suicide because of the way she looks, she was referred to as an ‘it’, and so on.
The motivational speaker says in a video, “Any form of bullying really does hurt.” However, her major story of success and self-achieved empowerment began, when she, instead of closing herself into a shell, ventured out and faced “the grown-up version of my dad coming to class.”
Velasquez wrote two books: “Be Beautiful, Be You” and “Lizzie Beautiful.” Now the young woman delivers motivational speeches to young students across Texas. A YouTube video titled “It Gets Better” was posted by her, and has had nearly 2.5 million views since she posted it in 2010.
About her medical condition, she talks of it with a great sense of humour. “My stomach is so small that I can’t eat that much”, she said. “So about 30 minutes after eating, I’m ready to eat again. I snack a lot just to keep my energy up.” Velasquez also talks about how bullying was in a certain way, therapeutic for her, because it helped her face real-world challenges. “I realized I don’t really want a cure for this syndrome. If a doctor found a magic pill or some surgery that would help me gain weight, I wouldn’t want it. All the struggles I’ve had made me who I am today”, said she. For her, the glass has always been half full. “I might get sick a lot, but I have really nice hair”, she says.
While she consumes above 5,000 calories daily, in small meals eaten every 30 minutes, as she said in a speech, Velasquez has never been able to weigh more than 60 pounds. Also blind in the right eye, in which her vision had started to fade since the age of four, Lizzie Velasquez is an example of a young woman with great spirit and determination, who fought and still is fighting against the constant ‘stares’ that most people throw at her, but she learned to rise above it and launch a platform through which she motivates other people to learn to accept themselves, stand up for themselves, and never lose hope, by placing her own self as a real-life example.
About accepting treatment in case of a medical breakthrough, Lizzie said –
“I would never ever ever change my appearance even if I could. It has taken me so many years to accept who I am and like the person I see in the mirror so I wouldn’t change it just to ‘fit in’.”