The Power of Decision in the Fight Against SMA
When Michelle Calise saw a segment about spinal muscular atrophy on the Today Show, it brought her to a devastating realization. The former nurse had wondered why her 11-month-old daughter, Corinna, was not developing as she should and had taken her to the doctor for tests. She was still waiting for the results of those tests, but as a former nurse, Michelle knew in the back of her mind what the diagnosis might be. This program confirmed her worse fear-spinal muscular atrophy.
But at the same time she realized her daughter was probably battling SMA, she also learned there was something she could do. The Today Show segment highlighted a family in Richmond that had founded an organization that was raising money and funding research to improve treatment and find a cure.
Michelle and husband Michael realized that this chronic and debilitating disease was what was afflicting their daughter. They decided to do something positive. “The decision to be positive and proactive against the disease was the most empowering thing we did,” Michelle remembers.
While friends and family wondered how they could take on the additional work of fundraising while caring for their daughter, Michelle never had any doubts.
“I’m very headstrong,” she says. “If I believe in something passionately, then something spiritual pushes me there and convinces others to come along with me.” And they do. In the small state of Rhode Island Michelle and Michael have built up an incredible network of people who help them raise money for SMA research.
Corinna is now six and in kindergarten. Her big smile and big heart keep Michelle and Michael going through the sleepless nights and frequent trips to the ICU. “She’s such an awesome little girl,” her Fighter Mom says.
Michelle advises other parents who want to take on the challenge of raising funds for SMA research to surround themselves with people who really want to help. Michael’s father, who runs his own business, has been an incredible force in getting other local businesses involved. “He sends letters to other businesses, like his suppliers, and asks for donations,” she says. “And they send it.”
Michelle has even gotten the mayor of her town – Cranston, Rhode Island – involved. Once, after a snowstorm, Michelle went to his office to complain that her street hadn’t been plowed. She explained that, because of her daughter’s condition, she needs to be able to get to the hospital at any time of the day or night. “Five minutes later, the street was plowed,” she says. Now, every time it snows, Mayor Steve Laffey calls to make sure her street has been cleared. Once, he even showed up at the Calise house with his son to shovel their steps!
Michelle says that when the mayor met her daughter, he was completely taken with her. “She has him wrapped around her finger,” Michelle says. He has attended the Calise’s bowl-a-thon and other fundraisers for Fight SMA, and on Corinna’s fourth birthday, he gave her the key to the city.
And in 2005, Corinna got to meet actress-singer Hilary Duff – a teen idol for many young girls.
Michelle says reaching out to people will usually yield these kinds of results. “Surround yourself with great people, and great things will happen.”