Waverly Avenue Bridge Memorial in Honor of Grace Peshkur

This week classmates and family of Grace Peshkur unveiled a memorial tribute to Grace at Chippewa Elementary School. The sign will designate the Waverly Avenue Bridge over the Long Island Expressway in Suffolk County as the “Grace Peshkur Bridge” in honor of this seven-year-old girl who died of the condition called “Butterfly Disease.”

In attendance at the ceremony were family and 400 of Grace’s grade-school friends who brought handmade butterflies etched with Grace’s name in order to pay tribute to her courageous life. 

Grace Peshkur of Holtsville passed away on May 17, 2009, at the age of seven. She suffered from epidermolysis bullosa (EB), also known as Butterfly Disease, a connective tissue condition causing blisters in the skin and mucosal membranes. EB sufferers resemble burn victims, but their wounds never heal.

“Today was beyond moving. The love for Grace was overwhelming and is a testament to the many people she touched in her short life,” said Assemblyman Dean Murray, in a statement. “Grace was so brave at such a young age, and I believe her mission was to bring awareness to this heartbreaking condition. The least we can do is name this bridge for her – not only to pay tribute but to help bring more awareness to Butterfly Disease in hopes of one day finding a cure. It was truly an honor to help see this young girl’s wish carried forward.”

Grace was an inspiration to the many families across New York who rallied around her. She greatly helped raise awareness about EB thanks to her appearances in numerous news stories as well as speeches before classrooms and community groups. 

Thanks to these efforts by Grace and her family and friends, new protocols for EB treatment were established, helping to improve the lives of thousands of children suffering from this disease. Because of Grace’s courage, the last week of October is now reserved as National Epidermolysis Bullosa Awareness Week in the United States.

“It’s a great honor that we can help a community heal after such a tragedy," said Sen. Lee Zeldin, in a statement. "By naming this bridge after Grace, it can memorialize her and her story as part of the permanent fabric of the Holtsville community. The dedication ceremony was filled with so much raw emotion and pride. I am so grateful that I had the privilege of being a part of such an amazing event. Grace was a hero to the Holtsville community, but the Holtsville community also did so much for her."