Clara Bergs may have difficulty with her words and face learning challenges at school, but when she puts on her tutu and twirls around the room, she charms the world.
The 10-year-old who has autism and a genetic disorder called DiGeorge Syndrome spun into the spotlight after a YouTube video of her dancing along to a 19th-century ballet delighted Internet audiences around the globe.
For Clara’s mother, what was truly touching about the reaction to her daughter’s performance, was the response from other families with special needs kids.
“They just said ‘Clara is an inspiration to us,’” says Lisa Anderson.
“Clara in her own little way, through her dancing in a little place in Toronto, has touched people around the world and, to me, that is phenomenal.”
The clip – which has been viewed more than half a million times – shows a smiling Clara dancing step-by-step to the Coppelia comic ballet in her family’s living room. She circles a footstool and, at one point, holds onto a cabinet for balance as she kicks her legs in the air. A small window at the bottom of the screen simultaneously shows a professional ballerina performing the dance and it’s soon clear that Clara has all the steps memorized.
For the little girl, ballet is now a key part of how she expresses herself.
“I like to go up on the stage. I like to do Coppelia,” she says excitedly when asked why she loves to dance. “I’m so happy.”
What’s remarkable is just how far Clara has come.
She spent her first 16 months in hospital going through multiple surgeries. Before she turned two, her parents noticed she had trouble connecting with people. She couldn’t walk until she was four and didn’t speak until she was six.
“She made no connection with people. Basically she tuned them out. You could scream in her ear and she wouldn’t look at you,” Anderson says.
“Now, she makes eye contact… She’ll see somebody and she’ll go over and give them a hug. She’s excited to be alive, she wakes up happy, puts on her ballet clothes, goes downstairs and dances until breakfast is ready.”
Amidst the many responsibilities that come with being a parent and caring for a special needs child, Anderson says the positive feedback generated by the ballet video has given the entire family a boost.
“It has brought some meaning to why we do it everyday, and why I fought for Clara so hard when she was a baby and didn’t give up when the doctors said there’s no hope for this child,” says Anderson.
The video, which was first posted online in September, spread like wildfire after Clara’s therapists told friends in Australia and Asia about the clip. Clara’s dancing was soon reported by media in Europe, the U.S. and Canada.
At one point, while on a family vacation in Florida this fall, Anderson recalls a smiling hotel bellboy saying he recognized Clara from her video.
“It was really uncanny that this guy in Florida knew who she was… That was really touching to us.”
The video was originally posted in an effort to encourage donations to fund Clara’s therapy – a program called Intensive Multi-Treatment Intervention that isn’t funded by the Ontario government. She enrolled in the program while waiting for another form of treatment paid for by the province, for which she has since been approved. Because she’s been doing so well with the IMTI program, however, her family has decided to continue it for now, despite the $3,000 monthly cost.
While the popularity of the YouTube video prompted enough donations to cover the cost of a few months of therapy, Clara’s family is constantly grappling with how to raise more.
“We’ll still be on this constant search for funding,” says Anderson, who hopes to approach more private donors in the new year.
She is also considering lobbying the government to give families the choice to pick an autism therapy program that’s best for their child.
“The more you as a parent can help your child as they’re younger, the better off they do as an adult,” she says.
“Clara’s prognosis was so poor, yet she has accomplished so much, in my opinion, in the 10 years she’s been alive. What can she accomplish in the next 10 years?”