Lizzie Velasquez is 5’2” and 60 pounds at 26. She was born eight weeks early and weighed two pounds. The doctors told Lizzie’s parents that there was a probability that she would not crawl, talk or walk. Doctors could also not give Lizzie’s parents her life expectancy. Her parents thought she was the most beautiful miracle. No one prepared her for what it would be like to be bullied and no one knew what would come out of the ashes of the painful experience of being bullied either.
She has Marfan syndrome. That means her body does not make fibrillin-1 and as a result, makes too much transforming growth factor beta (TGF-B) causing issues with the connective tissues in her body. Connective tissue holds cells, tissues and organs together so Marfan syndrome affects many different parts of the body, mostly, blood vessels, the heart, joints, bones and the eyes. It can also affect the skin, lungs and nervous system, however, intelligence is not affected. The conditions that Marfan syndrome can cause, can be life-threatening. One in 5,000 people have Marfan syndrome and they are women, and men who are black, white, Hispanic, this disease knows no gender, race or ethnicity. Three out of four people inherit Marfan syndrome. When someone is the first in their family to have Marfan syndrome, it is called spontaneous mutation.
If someone has Marfan syndrome, there is a 50 percent probability it will be passed down to each child they have. Marfan syndrome is a birth defect but the child may not show signs right away, some not even until they are adults if the syndrome is mild. Some symptoms, such as issues with the blood vessels, the heart, joints or bones will get worse over time. Accurate, early diagnoses and treatment can prevent life-threatening conditions. It is estimated that half of the people with Marfan syndrome do not know they have the disease. This is why Lizzie is bullied.
Lizzie has also been diagnosed with lipodystrophy which prevents her from gaining weight. This disease is so rare there are only two other people in the world known to have it. Lipodystrophy is an adipose tissue disorder. Adipose tissue is fat so this disorder is characterized by the inability to put on or keep on weight. There are many variations of lipodystrophy so the condition can also vary from loss of fat creating small depressed areas to virtually no adipose tissue at all. Moderate to extreme fat loss can affect metabolic complications such as higher levels of serum triglycerides and insulin resistance. Lipodystrophy can either be inherited or obtained through another illness or drug. This is why Lizzie is bullied.
Lizzie believed that she was just like everybody else until she started Kindergarten. She said a little girl looked at her as if she were a monster, her first experience being bullied. Lizzie just thought she was rude. Lizzie was bullied her entire childhood because she looked different then everyone else. In high school she was also bullied online through social media.
In 2007, Lizzie was browsing YouTube for music videos. She was 17 when she saw a YouTube video called, “The Ugliest Woman in the World.” When she clicked on it she discovered it was about her! To make matters worse it had over four million views. It was like being bullied by 4 million pairs of eyes laughing. Then Lizzie read the comments. She was called a monster. She was asked why her parents did not abort her. She was told she should be killed by fire, that people wished she were dead and then worst of all, she was told to end her own life. Teens today, who are being bullied online or at school are taking their own lives.
Lizzie understands what it is like to be bullied. She has been bullied since she was a child in person and then as a teenager, she was bullied online. She wants those who are being bullied to know there is hope and that it does get better. Also there is forgiveness.
Lizzie created her own website and YouTube channel, with over 300,000 subscribers about being bullied growing up. She did a TED Talk in 2013 at the TEDxAustinWomen in Austin. That video brought in over seven million views that encourages anyone who has ever been bullied. This is when the tides changed for Lizzie Velasquez, she had found her purpose, to tell everyone’s story, as she calls it because anyone can relate to Lizzie’s experiences in some way. She turned her illness into a blessing that enables her to inspire other people. Lizzie set up a Kickstarter campaign called, “The Lizzie Project.” She needed to raise $180,000 for a documentary about her life, about being bullied. She has 3,564 backers that have raised $215,000. These backers come from 16 different countries. The money was raised using anything from lemonade stands to pension fund.
A few months later, she was shooting a documentary of her path after being bullied. It premiered Saturday at the South by Southwest Film Festival. Sara Hirsch Bordo, directed the film. She said this story is for anyone who has ever been bullied. However, Lizzie calls it everyone’s story because she overcame adversity and made it through a painful experience giving others hope to push on to the other side. She does not want people to pity her but feel empowered. Lizzie’s documentary is called “A Brave Heart: the Lizzie Velasquez Story.” Director Bordo says Lizzie can relate to anyone with her sense of humor and inner strength. She can elevate the spirit of anybody.
Much of Lizzie’s strength comes from the leadership of her parents. They have always thought her to be beautiful, so when she cried over the YouTube video at 17, they told her to let it all out. Her parents told her she was going to have to go to school the next day, head held high with a smile. They also told her to be kind to everyone, regardless of how they treated her. Those were her orders. Now, nine years later, she has long since forgiven those people who bullied her. She says that she does not know what they were going through, but it could have been something worse than what she was experiencing as many bullies are being bullied themselves.
Lizzie has also written three books to help others dealing with being bullied. She is currently a lobbyist for the first federal anti-bullying law. Her film editor referred to Lizzie Velasquez as a “real life Rocky.” She was the underdog who is now empowered to give power to those who are being bullied.
By Jeanette Smith