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Obituary: Frank Michael Butler / Battle against cystic fibrosis was an inspiration

Obituary: Frank Michael Butler / Battle against cystic fibrosis was an inspiration

Frank Michael "Mikey" Butler, of Squirrel Hill, was a young man whose faith and good nature never wavered even though he spent perhaps half his life in a hospital.

He died early yesterday morning at UPMC Shadyside. In a Web journal that had kept friends from around the world apprised of his condition, Butler's parents wrote, "We're so, 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."

"There were thousands of people around the globe praying for him," said family friend Judi Kanal, of Squirrel Hill. "He touched so many people and taught so many people about life and belief and love."

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Mr. Butler was born with the genetic disease cystic fibrosis, which fills the lungs with glue-like mucus and obstructs the function of the intestines. When he was a few months old, a doctor told his parents that he would live for perhaps another hour.

His survival against the odds was the first of what would become many miraculous recoveries, said his mother, Nina Butler. But Mr. Butler took it all in stride, often displaying wisdom and grace far beyond his years.

He told officials from the Make-A-Wish Foundation that he was very fortunate and had everything he needed. At their insistence, he wished to celebrate his bar mitzvah in Israel, which was the dream the foundation fulfilled.

Mr. Butler was featured in the Post-Gazette in 1995 as a field tester of Starbright, an interactive computer network that linked children's hospitals.

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He was an emcee at the glamorous Washington, D.C., unveiling of the system, which was spearheaded by Steven Spielberg and Gen. H. Norman Schwarzkopf. He met them, as well as President Bill Clinton and Vice President Al Gore.

Mr. Butler realized another dream when he entered Yeshiva University in New York City. He got involved in student government and enjoyed college life, despite "schlepping an oxygen tank from class to class," as Nina Butler put it.

"He milked everything he could out of every experience," she said.

It quickly became clear that his studies would be repeatedly interrupted for two- or three-week "tune-ups" in the hospital, but the faculty and staff was determined to see him get his degree regardless of how long it took.

In December 2001, then-university president Rabbi Norman Lamm gave Mr. Butler his bachelor's degree at a surprise ceremony in a conference room at Pittsburgh International Airport.

Mr. Butler had a double lung transplant a few months later, but then developed a kind of lymphoma that is peculiar to transplant recipients. He lost much of his hearing and developed cataracts because of the powerful medications used to combat the cancerous condition, so he began using hearing aids and a magnifying glass.

In the summers during his college years, Mr. Butler volunteered at a camp for children with special needs. He was also very active in the National Council of Synagogue Youth, often playing drums at their events.

Mr. Butler also gave talks to motivate Jewish youth to learn more about their traditions, said his uncle, Rabbi Yale Butler, of Squirrel Hill. Leaders of the National Council of Synagogue Youth created a movement in which youngsters could pray and study for the young man.

"Up until his dying moment, he was in touch of hundreds of kids by e-mail," his uncle said.

Mr. Butler's family expects several busloads of students from Yeshiva University at today's funeral, which will be simulcast at the New York campus.

"If there's anything I learned from this very old soul in this young body, it's to not take anything for granted," his mother said. Her son didn't want to be so paralyzed by the fear of what could happen tomorrow that he didn't appreciate today.

He always expressed his gratitude for the kindnesses and courtesies of others. He said please and thank you even during his final days, his family said.

That was always his way. Happy to spend the Jewish holiday of Passover at home rather than in the hospital, Mr. Butler said in his online journal last April that not only did he thank God, but also his family and friends.

He wrote, "[E]ven when I have been struggling there is always someone there davening [praying], calling, writing, visiting, or even just smiling- and that is what gets me through."

In addition to his mother and uncle, Mr. Butler is survived by his father, Judge Daniel E. Butler; brothers Geoffrey, Andrew and Joseph, sister Mollie and grandmother Sylvia Butler, all of Squirrel Hill; and his grandparents, Morris and Phyllis Novetsky, of Southfield, Mich.

The funeral will be held at 12:30 p.m. today in Congregation Poale Zedeck, Shady and Phillips avenues, Squirrel Hill.

Memorial contributions may be made to the scholarship fund of Hillel Academy Foundation, 5685 Beacon St., Pittsburgh 15217.

First Published: January 27, 2004, 5:00 a.m.

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