LONG ISLAND: Classmates grieve for girl, 7

Students at Chippewa School put up 651 handmade

butterflies across the building's front windows in Holtsville this week, as a

memorial to classmate Grace Peshkur, 7, who died Sunday from a rare incurable

skin disease.

The butterflies are a symbol for epidermolysis bullosa, or EB, and were a

favorite of the first-grader whose family and friends said displayed an

indomitable spirit and smile even with a disease she battled since birth.

The skin disease causes severe blistering, agonizing open wounds that

required her to undergo painful dressing changes twice a day.

She could walk, but usually used a wheelchair because of the pain.

"She touched every single child in this building," said Chippewa principal

Patrica Pontius. "Everyone was happy when she was here. We called her the heart

of the school."

Her father, Michael Peshkur, said that when she was born the family often

asked "Why?" "But we found out why: to give our lives meaning," he said. "She

wasn't living in our world, we were invited into hers."

Family friends said her death came "out of the blue" after she came home

lethargic Friday. She died two days before her mother, Karen, delivered her

baby sister Emma Gray, whom Grace had named.

Even though 90 percent of her body had no skin, her father said Grace

grittily dealt with almost constant pain and vinegar baths, and helped dress

her own wounds. Even in her final hours she was apologizing for getting sick to

her stomach. "With so much pain I sometimes wondered where she got the stamina

and the life force to drive her, but she did ... . she was a supernova, but

even the brightest stars burn out."

During EB week, Grace went from class to class, talking to students about

her disease. She even played freeze tag in a gym class adapted so Grace could

participate with other kids. When she was too ill to attend class, the school

provided a video link so Grace could take part in class from home.

Grace's plight also touched her community - fire department, police and

community and business groups who raised money for the Grace Peshkur

Foundation.

Other survivors include her grandparents, Owen and Helen Farley of

Nesconset and Donald and Maureen Peshkur of Holbrook.

A wake will be held at Branch Funeral Home in Smithtown from 7 to 9 p.m.

today, and from 2 to 4 p.m. and from 7 to 9 p.m. tomorrow.

A funeral Mass will be held Saturday at Holy Cross Roman Catholic Church in

Nesconset.

Burial will follow at Holy Sepulchre Cemetery in Coram.

In lieu of flowers, the family asked donations be made to the Grace Peshkur

Foundation, P.O. Box 258, Holtsville, NY 11742.