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 loved music, knock-knock jokes, looking through clothes catalogs, was "a fanatic for Disney princesses" and made a trip to Disney World through Make a Wish Foundation, family and friends said. 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. Thursday, and from 2 to 4 p.m. and from 7 to 9 p.m. Friday.
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.