When Lizzie Velasquez was born by emergency cesarean section 29 years ago, doctors had never seen anything like her. She weighed 2 pounds, 10 ounces, had translucent skin, no amniotic fluid surrounding her but normal Apgar scores.
Doctors told her parents she would never be able to walk, talk or feed herself.
It would be another 25 years before she found out she had the extremely rare condition, marfanoid-progeroid-lipodystrophy syndrome. Velasquez, who weighs 64 pounds, has been unable to gain weight, is blind in one eye and has undergone various surgeries.
Despite the difficulties, her parents supported her, and she grew to do the normal things kids and teens do.
“They were first-time parents. You’d think they’d say, ‘Why us?’ But they didn’t. Instead, they said, ‘We’re going to take her home, we’re going to love her and we’re going to encourage her that she can do everything she can put her mind to,’” said Velasquez, who spoke at Sunday’s plenary.
At first, her parents were her voice. “They were the most perfect voice that I could ever dream of,” she said. But slowly, she found her own voice.
Today, Velasquez speaks out against bullying and discrimination, having experienced unthinkable meanness. Online, she was called the ugliest woman in the world.
Meanwhile, her doctors prodded and persisted to come up with a diagnosis. Velasquez finally had enough. She decided to stop the search for a diagnosis and stop living as a question mark.
She had no idea her voice eventually was going to be heard around the world, as her message has gone viral. She now is a motivational speaker and author.
During one appearance, the wife of a genetics expert heard her story and mentioned it to her husband, who reached out to her. Velasquez agreed to undergo a DNA test, in which her diagnosis was finally made.
“He looked at me, and the first thing he said was, ‘Now your mutation is this.’ I stopped him. We’re going to call it my difference, not my mutation. The words matter.”
“I hope you take that message out with you,” she told the audience “… Remember there’s a reason for everything. There’s a story behind everyone and everything. I’m no longer a question mark. Now I live my life as an exclamation point. And I hope you do the same as well.
“Parents, doctors, nurses, anyone who you know is going through something hard in their life … whether it’s medically, whether it’s personally, you have to start off by being their voice,” she continued. “They might not know how to use theirs. But their voice is there, and it’s your job — our job — to be able to start that growth, to be that foundation.”
For more coverage of the 2018 AAP National Conference & Exhibition visit http://www.aappublications.org/content/aap-national-conference-2018 and follow @AAPNews on Twitter and Facebook.