United States – At just 5ft 2″ (1.58m) tall and weighing a little over 27 kg, Lizzie Velasquez, 24, appears worryingly thin at first glance. But her tiny frame wasn’t caused by an eating disorder. Instead, it is the result of a syndrome so rare that it is shared by very few other people in the world.
Her condition means that try as she might, Lizzie, from Austin in Texas, finds it impossible to gain weight or store fat, and as a result, she’s forced to eat up to 60 small meals a day.
Despite the challenges, the courageous 24-year-old insists she wouldn’t change a thing about herself and, instead, throws herself into her work as a motivational speaker and anti-bullying campaigner.
“I would never, ever change my appearance, even if I could,” she says. “It’s taken me so many years to accept who I am and like the person that I see in the mirror so I would never change it just to “fit in”.”
But despite her bravery, the condition, which is yet to be fully diagnosed and named, casts a shadow over her life, not least because most of the people who suffer from the syndrome die in childhood.
Her doctor says: “Lizzie is one of the very few people in the world to have this condition. Sufferers have very little muscle mass, their limbs look very thin, spindly, and many of these people, they die very early in life. Other children with this have had very different experiences. Lizzie is 24 right now so she has beaten these odds.”
Because of the illness, Lizzie has already lost the sight in her right eye and has limited use of the other. Nevertheless, she has refused to allow that to stop her and has penned two best-selling books, and works as a motivational speaker doing up to 200 talks a year.
“My parents raised me to be completely normal. They never told me I was different,” she narrates. “The only thing is that I was smaller than the other kids but I was just like them. As I got older, I became more aware of why people were staring at me and I started getting really angry.
“I hated the fact that none of these kids wanted to get to know me. In my mind, I’m just like them and I would never tell my parents I was being bullied so my way of coping with it is when I would take a bath and nobody was in the room with me, and that’s when I would cry.”
Once, she saw a photo of herself on the Internet with a caption ‘The Ugliest Woman In The World’.
“I felt like somebody was putting their hand through the computer screen and punching me over and over,” she says. “There were thousands and thousands of comments. The first one said: “I just threw up over my keyboard. You’re gross.” The second, “eww, kill it with fire, now”. Others asked why my parents didn’t abort me because I’m so ugly. Can you imagine that?”
Despite the vile comments, Lizzie says she has no fear of bullies anymore and if she were to meet one in future, her response would be: ‘I won’.
For now, she’s concentrating on the future and the anti-bullying charity she hopes to set up.
“My dreams for the future are continuing to help others,” she explains. “I want to create an anti-bulling company. Something for kids and adults and teenagers who are struggling and so far, my dreams have come true.”