Lizzie Velasquez was born with a rare syndrome that stops her body storing fat and she is medically unable to gain weight. She was also born blind in one eye and vision-impaired in her left eye but, as she says proudly, “I have really nice hair!”
Lizzie has neonatal progeriod syndrome. She’s 5-foot 2 and has never weighed more than 29 kg.
When she was born, the doctors told her parents not to expect her to ever walk, talk, crawl, or do anything normal. They said, ” We’re taking her home, and we’re loving her.”
They said, ” We’re taking her home, and we’re loving her.”
“They raised me,” Lizzie says, “150% normal. Before kindergarten I honestly had no idea I was different from other kids. Now the other kids were scared of me, pointing at me, not wanting to sit with me. I couldn’t process it. I wasn’t doing anything to them, so why was this happening to me?”
She went home in tears and asked her parents what was wrong. They said, “There is nothing wrong with you. You are just smaller than the other kids. You are beautiful and smart and can accomplish anything. This syndrome is not what defines you.”
When Lizzie was seventeen she accidentally came upon a video of herself posted on YouTube titled, “The Ugliest Woman in the World.” Those eight seconds of video had received 4 million views with thousands of comments including “kill it with fire,” and “please, Lizzie kill yourself.”
“I read every single one of them,” says Lizzie. “Not a single one stood up for me. I bawled my eyes out for days.”
“I had no idea when I opened that video that it would make all the confidence I had go back down to nonexistent — to dirt.”
Some of the comments said things like “just go get a gun, put it to your head and take yourself out of the world. It will be a much better place,” and “put a bag over your head, because when people see your face they’re going to go blind.”
“I didn’t want to retaliate, that was a waste of time. I just wanted to prove them wrong. I could use this for some good.
“I’m not going to let those things define me. I learned that the best revenge is to define yourself – and I did.
“I would define myself by my accomplishments.”
“Tell me those negative thoughts and I’ll use them to build a ladder to climb up to my dreams.”
Today Lizzie is an acclaimed motivational speaker, the author of three books, the subject of the internationally acclaimed documentary, “Brave Heart,” a leading anti-bullying activist and has her own YouTube channel with hundreds of thousands of followers.
Plus she is just getting started on her dreams.
“I’ve had a difficult life,” she says. “But that’s okay.” She also has tremendous gratitude. She has, as she says, “a fighting spirit.”
“You are the one that defines what defines you!”
The NDIS is set to re-define the lives of people with disability
The National Disability Insurance Scheme (NDIS) is life-redefining reform for people with disabilities.
By handing over control of government funding to individuals, it is handing over choice. Choice of which service best meets their need. Choice of the types of supports that make a difference.
Under the NDIS, people with disabilities will no longer be limited to what services they are given, instead they can seek out the types of services they want and need, and choose them directly using an approved funding package they control. It will give people living with disabilities wider opportunities to live their life the way they want to.
The NDIS will foster people’s strengths and ability to re-envisage their goals and aspirations. It will redefine who they are.
But all this choice and control can be daunting. For some, they will initially find it difficult to know all the services available or where to find them. It may be challenging to manage multiple service providers or high staffing ratios. Knowing the health care system is important for people with complex health and medical needs.
That’s why the NDIS offers funding for Support Coordination assistance for those needing to navigate the complex disability service environment.
CCNB is an exclusive provider of NDIS Support Coordination.
We are experts with extensive knowledge of the disability system and the supports and services available.
We are independent advisors who can be trusted because we only provide support coordination services, meaning we have no vested interested in which services are chosen.
For more than 21 years, CCNB has been an unbiased advisor to thousands of people across Northern Sydney with the intent of building their capacity for independence and control.