Frank Michael “Mikey” Butler, the Pittsburgh native who publicly battled cystic fibrosis, died on January 26 at the age of 24.
He had been hospitalized for more than four months to treat the lymphoma he developed as a result of a lung transplant.
Through regular e-mail updates from Butler’s mother, Nina, thousands of people have been privy to the family’s rollercoaster ride with the genetic disease. For the past few years, Nina has been detailing the ups and downs of the sickness, and her messages, renowned for their signature ending “Day by Glorious Day,” have been posted on a Web journal.
Butler’s parents sent out their final update January 26: “We’re so sorry to have to tell you that, after 24-years of resisting, Mikey’s body — which never did measure up to his spirit — gave out.”
Butler’s struggle was the source for a nationwide campaign called “A Mitzvah for Mikey.” In 2002, the National Conference of Synagogue Youth, the Orthodox youth group of which Butler was a leader, asked its members to undertake one good deed, or mitzvah, on Butler’s behalf. The idea took off and his friends soon launched a Web site, mitzvahformikey.org, to expand the project.
Butler, who was active in NCSY and the Hebrew Academy for Special Children’s camp for the developmentally disabled, made headlines in the local Pittsburgh papers two years ago when Yeshiva University president Rabbi Norman Lamm personally conferred a Bachelor’s degree in political science and business on Mikey in a surprise, private ceremony at the Pittsburgh airport. Butler was known to sing the praises of the university, where he was active in student government and various activities. Butler’s determined academic study at Y.U. — often cut off by stays in the hospital — was an inspiration, friends said.
“His entire existence was a miracle,” said Ephraim Shapiro, a close college friend. “He wanted to be everyone’s best friend and touched so many people.”
As a teenager, Butler was one of the pioneers of Starbright, a communication support system backed by Steven Spielberg that links hospitalized children nationwide.
The funeral service was held in Pittsburgh with a concurrent memorial service taking place in New York at Y.U.
Butler is survived by his mother, Nina; father, Danny; brothers, Gavri, Uri and JJ, and sister, Shoshi.
This story "Mikey Butler, 24, Loses Fight Against Cystic Fibrosis" was written by Miriam Colton.