Wheaton family proves 'Cammy Can,' fights rare disorder by founding nonprofit

WHEATON – For the first six months of her life, Cameron “Cammy” Babiarz hit all her developmental milestones, such as rolling over and sitting up.

Then, suddenly, she stopped progressing.

“She showed no interest in transitioning, trying to crawl, trying to walk, pulling herself up,” Cammy’s mother, Jackie, said. “She was getting weaker. She could no longer sit up independently.”

Jackie and her husband Bill Babiarz, both Wheaton residents, began to worry, but were assured that children develop at different speeds. Cammie reached nine months and made no progress. By the time she turned 1, her pediatrician was worried and started a battery of tests.

All the results were normal.

At 14 months, she was no longer able to use her hands for fine motor skills, and in the end was constantly putting them in her mouth instead.

When she turned one-and-a-half, a doctor recognized that her loss of skills, hand sucking and the absence of language development or crawling were all classic signs of a rare genetic disorder called Rett Syndrome.

The doctor said more blood work was necessary to be sure, but Jackie knew what the tests would show.

“When we got the blood results, we were devastated,” she said. “It was a complete loss. It felt like we just lost a life, truly.”

The diagnosis came in January 2011. The family was relieved to finally have an answer, Jackie said, because “once you know what it is, you know how to fight back.”

Soon after, the Babiarzs started Cammy Can, a nonprofit dedicated to raising Rett Syndrome awareness. The family holds an annual Cammy Can Cinderella Story March Madness fundraiser, which has yielded about $70,000 over the last two years.

Thanks to the efforts of friends – and complete strangers – Cammy Can has collected more than $150,000 in the two-and-a-half years since Cammy’s diagnosis.

“We really want people to know that she’s a typical 4-year-old in so many ways,” Jackie said. “She understand everything you say. She’s just trapped in her body and can’t let her thoughts out.”

Kate Barnes, the program director at Boston Children’s Hospital, one of the leading institutions studying Rett Syndrome, called the Babiarz family a “force of nature.”

“If I could think of one family who could do the most they could possibly do with every moment of their lives, it’s the Babiarz family,” she said. “They really try to maximize her quality of life.”

Barnes said that because of parents such as Jackie and Bill, communities are becoming more educated about Rett Syndrome and opportunities are growing for those with the disorder.

“For a long time, people underestimated the nonverbal communication abilities of these girls and women, and that’s changing,” said Dr. Walter Kaufmann, director of the Rett Syndrome Program at Boston Children’s.

The disease is not degenerative, Kaufmann said, and, with work, some skills can return or new ones can develop.

Though Cammy’s future is uncertain, Jackie said, those who have reached out to her family have made living in the now easier.

“Tears just roll down my eyes any time we hear something or get a note of inspiration,” she said. “Some of the people who have been inspired by Cammy are perfect strangers. It’s helped my faith in people, and helps me be a better mom and push even harder for a cure.”