NEWSDAY: Wantagh couple looks for cure for child’s disease

BY JIM MERRITT Special to Newsday

Vincent Gaynor of Wantagh believes that, in most respects, his is an “an average American family.” Gaynor, a 1994 Herricks High School graduate, met the former Catherine Kamieniak, a 1996 Lindenhurst High School graduate, at a party in Manhattan in 2004, and they married in September 2006. They planned to have children right away.

Catherine gave birth to Sophia, their first child, on Feb. 27 of this year. Two weeks after that, they noticed that their daughter, who has light brown hair and blue eyes, wasn’t able to move around like other children.

In April, Sophia was diagnosed with spinal muscular atrophy, a rare, degenerative motor neuron disease known as SMA. Her decline has been rapid. Unable to crawl, sit or even hold her head up, Sophia spends her days lying on her back. She is connected to life-sustaining equipment that helps her with breathing, coughing and other bodily functions. The life expectancy for children born with the genetic disease, which affects one in 6,000 live births worldwide, is 6 months to 2 years, he adds. Many of the disease’s victims die of pneumonia.

To care for Sophia, Gaynor, 32, left his job as a steamfitter with Local 638 in New York City, and Catherine, 31, quit her position as an administrative assistant. They are living on savings, while they raise money for a cure. So far, they have collected $34,000 at private fundraisers toward their goal of $100,000. They have a Web site, sophiascure.com.

The money would pay for Sophia’s participation in a clinical trial planned by Dr. Hans Keirstead, a researcher in the field of spinal injuries, at Reeve-Irvine Research Center at the University of California-Irvine. Gaynor is hoping the experimental treatments will start in January, and that Sophia will be one of the nine children chosen to get the potential cure.

The treatment involves stem cells converted to motor neurons, which would be injected into Sophia’s spinal column. Gaynor and his wife, who are Roman Catholics, know of their church’s stand against embryonic stem cell research. However, Gaynor said he believes “it’s OK as long as we have made peace with God.” He credits his faith with giving him strength to deal with the crisis.

Gaynor said: “We don’t feel like we’re hurting somebody in order to save our daughter because they are an existing [stem cell] line with cells reproduced in a Petri dish. It’s not like we’re harvesting eggs.” Sophia was christened in May in a private family ceremony at their parish, St. Frances de Chantal Church in Wantagh. They bought her an Easter outfit, and her dad recently made a jungle gym out of PVC, which Sophia can play with while lying down.

“We try to show our daughter as much love as possible,” said Gaynor, adding that he is committed to vanquishing SMA, even if the cure isn’t found in time to save his daughter. “Ten years from now, I will still be fighting.”

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