Caitlin O’Hara, who brought compassion to others while she sought a transplant, dies at 33

Caitlin O’Hara, pictured in 2012, was diagnosed with cystic fibrosis on her second birthday. She died Dec. 20 due to complications from a double-lung transplant.courtesy

An organ transplant is “a complicated concept,” Caitlin O’Hara once wrote.

“Someone has to lose a life for you to get a chance,” she said in an essay she posted on the Cystic Fibrosis Lifestyle Foundation website while awaiting a double-lung transplant that would give her new hope. “As the old adage goes, there are no guarantees for anyone in life, and there is no guarantee that it will happen, that I will get to live an incredible life like I see my friends living.”

Diagnosed with cystic fibrosis on her second birthday, and initially not expected to live past 12, she had been on the transplant list nearly two years and eight months when the day for surgery finally arrived, a week before Christmas. The quandaries she had faced were more than just philosophical. At 5-foot-2, she needed small lungs. Combined with the rules governing who gets donated organs, physical factors made her wait for a match perilously long.

Two days after the surgery, as complication followed complication, Caitlin died Tuesday at the University of Pittsburgh Medical Center. She was 33 and had lived most of her life in Ashland and Boston.

“I often said she was beautiful on the outside, but even more beautiful on the inside,” said her father, Nick. “Her caring heart for other people, and for other people’s plights, was always foremost.”

To that end, she was a founder of Friends of the Prouty Garden, a group that tried unsuccessfully to save a place of tranquility she had treasured during her stays as a girl at Boston Children’s Hospital. “I walked into the Prouty Garden while somebody held the boxes attached to my chest tubes,” Caitlin told the Globe in January 2015. “I found peace and reassurance. I felt the inspiration that nature gives you.”

Inspirational herself, and as eloquent in person as she was on the page, Caitlin formed bonds of friendship that will endure past her 33 years.

“There aren’t really any words to describe her as a friend. She was my person. She was my heart,” said Jess Danforth of San Francisco, who attended St. Mark’s School in Southborough and Boston College with Caitlin.

Caitlin O’Hara, pictured with her dog during Christmas 2012, was “even more beautiful on the inside,” her father said.courtesy

“She was the kind of friend who, regardless of what was going on in her life, always made you feel like you were her priority, which is pretty exceptional,” she added. “When Caitlin was sick, I flew to Pittsburgh and was there for eight days or so. I just told her over and over again, ‘I love you more than life itself. I love you more than the most, and I love you farther than the farthest.’ ”

During the lengthy wait for new lungs, Caitlin, her parents, and her friends became ardent advocates for organ donation. In blog posts and interviews, they also challenged the standard procedures for determining who receives available organs, and which patients are considered for transplants. Caitlin moved to Pittsburgh two years ago to join the transplant list at UPMC because her Boston physicians considered her condition and its complications too risky for a double-lung transplant.

Her boyfriend, Andrew Sutryn of Wells, Maine, said Caitlin’s family and friends also have been reminding everyone that it’s not enough to simply designate yourself as an organ donor on your driver’s license.

Several websites, including organdonor.gov, provide instructions for how people can sign up for supplemental registries that ensure their names are in databases in case, upon death, a driver’s license or donor card isn’t nearby.

“This woman had a will to live,” Andrew said of Caitlin’s desire to work and advocate and travel and explore all life’s avenues, when health allowed.

“I met her 4½ years ago and I’m realizing now she saved my soul,” he added. “I don’t want to know the man I would have been if I had not met Caitlin O’Hara.”

Born in Framingham, she was an only child and grew up in Ashland. Her mother, the former Maryanne Bavaro, is a writer who, under her married name, Maryanne O’Hara, has published short stories and the critically praised 2012 novel “Cascade.” Her father, Nick O’Hara, was born in Wexford, Ireland. After moving to the United States in 1980, he founded O’Hara and Company, which has an artistry expertise in masonry.

The day Caitlin turned 2, a doctor called Maryanne with the cystic fibrosis diagnosis. While the illness presented challenges throughout Caitlin’s childhood, adolescence, and adult years, “She never complained, let me tell you,” her mother said. “She never felt sorry for herself. She often said, ‘I would not change anything about having CF. It made me the person I am, it made me a better person.’ ”

Caitlin attended the Fay School in Southborough and graduated from St. Mark’s School. “Caitlin was, honestly, a bit of an art history genius,” her mother wrote on 9LivesNotes.com, a blog she created to provide updates on Catlin’s health, and which draws its name from a play on Caitlin’s nickname, Kitten.

Caitlin O’Hara at the Carnegie Museum of Art in Pittsburgh this year.courtesy

An AP art history class at St. Mark’s set Caitlin on her way professionally. She attended George Washington University in Washington, D.C., until her health prompted a return to Boston. Drawn by its co-op program, she initially attended Northeastern University and worked as an intern at the Isabella Stewart Gardner Museum. Ultimately, Caitlin transferred to Boston College and received an art history award upon graduating.

She worked as a gallery assistant at Polly Latham Asian Art in Boston and launched her own business, Knot Clothing, with a former boyfriend. Switching to graphic design because it allowed her to work from home, she spent a few years with the Center for Digital Imaging Arts, which was affiliated with Boston University.

“She was really special: really smart, really funny, and very soulful,” her mother said, adding on the blog that Caitlin once considered pursuing a master’s in philosophy. “She got too sick to really pursue that, but she read deeply, and was only interested in reading good, complicated things.”

In 2012, Caitlin lived briefly in Paris, venturing to France alone, medical equipment in tow. Though cystic fibrosis was always present and part of her planning, she noted that the illness could be cloaked in irony. “We with CF are graced with the ability to look great even if we feel miserable,” she wrote in the Cystic Fibrosis Lifestyle Foundation essay.

In a separate blog post, she contemplated the suffering she saw throughout the world, and considered the context it provided for what she and others endure. “We just have to keep living,” she wrote little more than a month ago. “Step back. We are just tiny beings.”

In addition to her parents and her boyfriend, Caitlin leaves her grandmothers, Eileen Hore of Wexford, Ireland, and Florence Bavaro of Scarborough, Maine.

The family will hold a private service and announce plans for a public celebration of Caitlin’s life.

Last year on Christmas Day, Caitlin decided to open a box with new red slippers from L.L. Bean that she had set aside to wear only after her transplant, a time when life would begin anew.

“They were RUBY SLIPPERS for goodness sake, and I hadn’t even realized it,” she wrote on the blog. “I gave them to myself for Christmas, this morning. I can always buy new ones after transplant . . . but hopefully I’ll be buying sneakers instead. You have to believe in magic sometimes. There’s no place like home.”