Family loses another 'ray of sunshine' to cystic fibrosis
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Rebecca Auble always looked forward to chatting with the tiny, dark-haired young woman who served her chai lattes at Starbucks. The woman would ask Ms. Auble, a Squirrel Hill psychotherapist, about her day, as if that was the most important thing in her own day.
In 2000, Katie Michel, front, poses for a family photograph with her surviving siblings, from left, Patrick, Christopher and Jennifer Flemming, and mother and father, Joan and Jim, during a family vacation to Hawaii.Click photo for larger image.
Ms. Auble had no idea that Katie Michel, a math and physics major at Duquesne University, was battling a fatal disease that had already claimed a brother and two of her sisters.
Katie Michel, 24, died Tuesday at UPMC Presbyterian of complications from a double-lung transplant, the second of which she underwent because cystic fibrosis had ravaged her own lungs. It was a final early death in more than 30 years of sorrow for her family. Yet those who knew them could speak only of the love, joy and compassion with which she and all of her family embraced life.
At Starbucks, Ms. Michel would talk enthusiastically with Ms. Auble, who was a generation older, about her studies.
"She spoke, with impassioned awe, about this wonderful planet that we live on and the universe we are a part of. She wanted to use physics as a way of beginning to understand what it means to be alive and to be part of everything," Ms. Auble said.
Ms. Michel was the youngest of eight children of Jim and Joan Michel of Moon. They knew soon after birth that she had the fatal disease that had already killed one of their sons, and that two of her sisters then battled.
Cystic fibrosis causes thick mucus to clog vital organs, especially the lungs. Hereditary, it requires one defective gene from each parent. If both parents carry the gene, each child has a 25 percent chance of inheriting the disease, according to the Cystic Fibrosis Foundation. About 30,000 people in the United States have cystic fibrosis, but 10 million carry the gene. There is no cure.
The Michels' daughter Julie was the first of their children to be diagnosed, in 1972, when she was 9 months old. She died at age 16. A son, James Jr., died at 4 months in 1974. Another daughter, Alison, was nearly 20 when she died in 1998.
The afflicted girls found strength in each other.
"They encouraged each other. They never used their disease as a crutch. They wanted to do what everybody else was doing and they lived their lives as best they could," Joan Michel said. "Katie had very good care from the beginning."
Dr. David Orenstein, director of the Antonio J. and Janet Palumbo Cystic Fibrosis Center at Children's Hospital, treated all three daughters.
"They are the most incredible, wonderful family, with spectacular, spectacular kids," he said, speaking of all six children.
"They are bright and pizzazzy and wonderfully engaging and funny. Every one of those kids was a light-up-the-room kind of person."
He found that astounding, not only because they knew they lived under a death sentence. Staying alive required at least an hour a day undergoing physical treatment that involved pounding on the chest to loosen and expel mucus.
"That is very time-consuming for one child, let alone four," he said.
Each girl lived a few years longer than the last, paralleling incremental progress made in treating the disease, he said. Drugs rendered Julie deaf for the last year of her life, "but she didn't lose that sparkle," he said.
"All of them were going to die, ultimately, from a disease that makes it impossible to breathe. That is an amazing, amazing burden. And yet they remained quite remarkable in that spark. We have a lot of incredible families and kids, but Katie, Ali and Julie certainly stand out."
Currently, he said, clinical trials are being held on drugs that promise great breakthroughs.
"We think these are going to make a big, big difference to people who are coming along now. The outlook is going to be a whole lot better," he said.
The Michel family focused on their gifts, not their burdens, said Sister Francine Horos, principal of Our Lady of the Sacred Heart, Coraopolis, where the Michels went to high school.
"Their strength was from their faith and from their family," she said of the three girls who were ill. The sons and healthy daughter played sports, and their father coached. The whole family turned out to hear Alison play violin. They came to see Katie in plays in which she never starred, but was thrilled to take part.
After Alison died, the family created a memorial college scholarship, and each year they held a flower sale to raise money for it.
"The family ran it all themselves, in her memory. It was very successful," Sister Francine said.
"Katie loved life. She was always upbeat, always positive. She just wanted to be like everybody else. Unfortunately, she didn't have that gift of time."
Katie, Sister Francine said, was determined to go to college. Any plans beyond Duquesne were hazy -- she died two semesters shy of graduation. But she had always loved riding roller coasters whenever she was well enough. She drew models of them.
"I think she was thinking of designing them, but I don't know if she was serious," Joan Michel said.
After a double-lung transplant in 2005, she felt healthy for the first time ever. She went to school full time, moved to an apartment and got a job at the Starbucks at Forbes and Shady avenues.
Jocelyn Hillen, the manager who hired her, was the only one who knew of her illness.
"She was amazing. She had the best sense of humor of anybody that worked here. All the customers loved her. And she was really proud of her job because it was the first job she was able to have," Ms. Hillen said. "She worked really, really hard. And she was always a ray of sunshine."
She suffered a rejection episode with her transplanted lungs in September 2005, but returned two months later, cheerful as ever. Ms. Auble was delighted to see her favorite barista, and asked if she'd been busy with studies or an extended vacation.
"All she said, and it was in passing, as if it was perfectly ordinary, was, 'Oh, I've just been ill. But I'm all better now,'" Ms. Auble said.
"I wondered what kind of illness would have kept her away for several months, but I thought that if she wanted me to know, she would have told me."
Last summer, rejection flared again. She was in and out of the hospital, entering for the last time on Nov. 13. On Jan. 15, she underwent her second double-lung transplant.
"She had a difficult time with it from the beginning, but we were always hopeful," her mother said.
She died, as she had lived, surrounded by family and friends.
Looking back, Ms. Hillen said, she'd ask Katie sometimes when things were quiet how she coped with the disease and with the knowledge of her sisters' deaths.
She discovered that Katie Michel embraced life rather than feared death -- and never looked too far down the road.
"She had never expected to make it for this long. She never looked that far into her future because she didn't think she would have one. Her big ambition was to graduate from college," Ms. Hillen said.
"She wasn't scared. She had an amazing spirit."
In addition to her parents, Katie is survived by two sisters, Jennifer Flemming of Corona, Calif. and Kerry Bright of Suffolk, Va.; and two brothers, Patrick of Bridgeville and Christopher of Moon.
Visitation is today from 2 to 4 and 7 to 9 p.m. at Copeland's of Moon. Funeral prayers are at 9 a.m. tomorrow followed by a 9:30 a.m. Mass at St. Margaret Mary Catholic Church, Moon. Burial will be in Mount Olivet Cemetery.
Gifts may be made to the Alison J. Michel Memorial Scholarship at Our Lady of the Sacred Heart, 1504 Woodcrest Ave., Coraopolis, PA 15108 or to the Cystic Fibrosis Foundation, 810 River Ave., Suite 100, Pittsburgh 15212.
Correction/Clarification: (Published July 31, 2007) Katie Michel was the youngest of eight children. This obituary as originally published on July 27, 2007 was incorrect about the size of her family and omitted the name of a surviving sister, Kerry Bright of Suffolk, Va.
First Published July 26, 2007 11:32 pm
