Marriage is a big step for most couples. For Bill Carroll and Missi Wright, it was a milestone at the top of a mountain.
Their decision turned Wright’s Hospital of the University of Pennsylvania room into what could have been a scene from a Nicholas Sparks novel.
Throughout their 11-year relationship, 31-year-old Carroll and 36-year-old Wright opted out of an official marriage because it may have impeded Wright’s healthcare benefits.
“That was the most important thing, that she got the care she needed,” Carroll said.
On July 2, Carroll and Wright exchanged vows in a ceremony in Wright’s streamer-draped hospital room, surrounded by a group of 20 friends and family members.
“It was a very touching ceremony,” Director of the Adult Cystic Fibrosis program at HUP Denis Hadjiliadis said.
Wright had told her team of doctors that if she had no chance of getting better, she didn’t want to be on a machine all the time. “We discussed the fact that there was no way to make things feel better,” Hadjiliadis said. On July 3, Wright was taken off the ventilator. She died around 10:25 p.m., holding her husband’s hand.
Wright was diagnosed with cystic fibrosis at 7-months old, according to her older sister, Rachel Gillis. The youngest Wright sister, Colleen, was diagnosed with cystic fibrosis at birth and passed away in 2000 at age 18, only 26 days after her admission to the Children’s Hospital of Philadelphia.
Hadjiliadis — who was one of the doctors on Wright’s team — called cystic fibrosis a “disease based on genetics.” However, the disease — which involves a buildup of sticky mucus in the lungs — does not run in Wright’s family.
“[My family] didn’t know anything about cystic fibrosis when Missi was born,” said Gillis. “No one in the family had it...we had never heard of it.”
Gillis said that their mother, a single mom, along with other family members, familiarized herself with how to give pills and perform percussion treatments to loosen mucus in her daughters’ lungs.
Wright was admitted to HUP on June 10 after a chest X-ray revealed patches of pneumonia in multiple areas of her lungs. Despite her lung transplant two and a half years ago, Wright’s health continued to decline, Gillis said. Doctors put Wright on a bilevel positive airway pressure, or BiPap machine, when she arrived at the medical intensive care unit on the June 12
“Each day, [she] was getting dramatically much worse,” Carroll said.
Soon after Wright’s hospitalization, the doctors expressed to Carroll and her family that Wright’s condition was “looking a little more grim.”
Carroll recalled asking Wright if she wanted to “make this serious, here, in the hospital,” before proposing on June 30.
The couple met in 2003 at a friend’s graduation party. Carroll said that they “started off slow,” doing the “kind of normal thing any couple would do” before taking their relationship to the next level.
After about a year, the couple moved in together and Wright earned a Bachelor’s degree in healthcare administration at St. Joseph’s University, all while enduring her illness.
Carroll and Wright continued to live their life as a couple “in the midst of having to deal with her [cystic fibrosis] issues,” Carroll said. They went on trips to the beach and Niagara Falls and also volunteered at cystic fibrosis fundraisers and walks.
As Wright’s health declined, their connection translated from romantic vacations to “time spent in the hospital.” Carroll recalled “sitting with [Missi] in the hospital for hours on end, just being there for her support.”
More than a final act of love, Carroll’s proposal was rooted in hope.
“We wanted to do it, but also in an attempt to help boost her moral a little bit, give her something to strive more...give her a little more pride in herself,” Carroll said.
“He wanted to lift her spirits and help her continue her fight in the end,” Gillis added. “We didn’t realize that it would be so short.”
Carroll asks that any donations be made to the Cystic Fibrosis Foundation or to the Make-A-Wish Foundation.