New York Gov. Andrew Cuomo talks with reporters at the...

New York Gov. Andrew Cuomo talks with reporters at the Capitol in Albany. (June 17, 2011) Credit: AP

A bridge that spans the Long Island Expressway in Holtsville has been renamed in memory of Grace Peshkur, a 7-year-old girl who died two years ago of epidermolysis bullosa.

"She was my hero," said Karen Peshkur, her mother. "We would drive over that bridge a couple of times a day. To see her name there would be very heartwarming. It would make me very proud."

Gov. Andrew M. Cuomo signed a bill Friday to change the name of the Waverly Avenue bridge. The legislation was sponsored by state Sen. Lee Zeldin (R-Shirley), Assemb. Dean Murray (R-East Patchogue) and Assemb. Al Graf (R-Holbrook).

"By naming this bridge after Grace, it can memorialize her and her story as part of the permanent fabric of the Holtsville community," Zeldin said in a statement.

Grace, of Holtsville, died on May 17, 2009. Epidermolysis bullosa, also known as the "butterfly disease," causes severe blistering of the skin and agonizing open wounds. During her short life, Grace helped raise awareness about her disease. She was featured in several news stories and spoke to classrooms and groups about the condition.

The last week of October is now reserved as National Epidermolysis Bullosa Awareness Week because of Grace's efforts, the legislators said. "Grace was so brave at such a young age," Murray said in a statement. "Naming this bridge after her not only keeps her memory alive within the community, but also will bring more awareness to this disease in hopes of one day finding a cure."

Karen Peshkur said her family has continued to raise awareness about her daughter's disease in the years since her death. "She taught me to cherish each moment in life," she said. "And that's our goal now."

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