Philly-area woman gets wedding 'she deserved' 1 day before her death

MORTON, Pennsylvania — It was a pretty simple calculus that propelled Bill Carroll into a relationship with Missi Wright in the summer of 2003.

"In all honesty, it was her looks and that she was five years older than me," Bill said. "Those things get your attention, especially when you're 20 years old."

By year's end, Missi and Bill were living together and the relationship was taking off.

"Things were pretty serious from the jump," Bill said Thursday afternoon. "I have always felt absolutely fortunate to be with her. Missi puts everybody else ahead of herself and is one of the most caring and selfless people I know, which is saying something considering her condition."

Through a friend, Bill knew Missi had some type of medical issue before they started dating.

"At the time, I didn't question what that sickness was, but I remember after about a week together she had to go into the hospital. It was nothing serious, just the normal stuff you deal with when you have cystic fibrosis and need to bump up your immune system."

It was a brief stay and before long Missi was back in class at St. Joseph's University and enjoying life with her new boyfriend.

"There was a good stretch after we met where she didn't have to go to the hospital for a year or two," said Bill, a graduate of Springfield High School. "Separate of that, Missi has been in the hospital at least once every year of her life."

When Missi's health allowed, the couple enjoyed the beaches of Wildwood, New Jersey, and Ocean City, Maryland, jetted off to Jamaica, stuffed their faces at Nifty Fifty's in Ridley Township and Alfredo's Pizza in Morton, tossed back drinks with friends at the bars along MacDade Boulevard and enjoyed quiet nights in front of the television at their home in Morton. Talk of marriage would surface from time to time, but the conversation always brought them back to the same place.

"We never went through with it because it would have affected her health care benefits," said Bill, who works as an IT consultant. "I don't make the best living, but it would have been enough to (jeopardize) her Medical Assistance.

"Being together so long, we kind of considered ourselves married anyway."

Like her younger sister, Colleen, Missi was diagnosed with cystic fibrosis as a baby. The genetic disease, which affects about 30,000 children and adults in the U.S., causes thick, sticky mucus to build up in the lungs, digestive tract and elsewhere in the body.

Respiratory symptoms include persistent coughing, wheezing, shortness of breath and frequent lung infections.

"When Colleen was born, they took half of her intestines out and her health was always getting progressively worse," said Rachel Gillis, the oldest of the three Wright sisters. "Missi's issues developed over time and she was much stronger than Colleen, who weighed just 89 pounds."

A freshman at Delaware County Community College, Colleen Wright died Jan. 24, 2000, at Children's Hospital of Philadelphia, where she had been admitted 26 days earlier.

"Losing Colleen at such a young age made Missi want to be one of the longest-living people with CF," said Rachel, who was not born with the disease.

Missi battled her symptoms well enough to earn a degree in health care administration from St. Joe's. Before her health deteriorated, she worked as a health care advocate for a company that served as a middleman between patients and their insurance companies.

"Eventually, she had to give it up," Bill said. "In addition to the (respiratory) issues, she had digestive problems and diabetes that was brought on by the cystic fibrosis.... She would wake up and do her breathing treatments, take her meds for the day, take the same meds later in the day and then do the finger stick for the diabetes."

When she was unable to work, Missi, who attended Cardinal O'Hara and Archbishop Prendergast high schools before opting to drop out and earn a GED, kept herself busy with a coupon blog and baby cake business on Facebook.

She also volunteered for the Cystic Fibrosis Foundation and cared for Rachel's children — Mariah, her 4-year-old goddaughter, and 15-month-old Isaac.

"She loved them so much and considered them her own," said Rachel, whose oldest is named after singer Mariah Carey, whom Colleen met through the Make-A-Wish Foundation a week before she died. "She would always say, 'How are my two children? I know you gave birth to them, but they're mine.'"

Rachel said the disease dragged her sister down slowly.

"Missi has always been such a fighter," she said. "Over the past five years or so, things got much worse. Looking back at pictures, you can really see the difference, especially in her face, which got a lot puffier because of the steroids. She really hated that."

A lung transplant in January 2012 generated hope for better health, but only resulted in a longer list of medical problems.

"Post-transplant, she was diagnosed with lymphoma, which the medicine cleared up, and then a paralyzed diaphragm," Rachel said. "She also had a lot of anxiety because it was getting harder and harder for her to breathe. The doctors said she got the perfect lungs — a perfect set — but after the transplant, it was one issue after another."

When a chest X-ray at Springfield Hospital revealed patches of pneumonia in multiple areas of her lungs, Missi was admitted to the Hospital of the University of Pennsylvania on June 10.

"She went in on a Tuesday and on Thursday she sent me a bunch of text messages," Rachel said. "She didn't flat-out ask me to come see her, but it was obvious she was scared and wanted me there."

When she first arrived at the medical intensive care unit, Missi was breathing with the help of a bilevel positive airway pressure, or BiPAP, machine.

"It helped give her oxygen so she could relax more and help clear the pneumonia," Rachel said.

When Missi's condition failed to improved, a breathing tube was inserted and she was given sedatives to keep her comfortable.

"The thinking was that once she got better they would take her off the vent," Rachel said. "They tried a couple times, but it didn't work. She couldn't breathe on her own."

With his girlfriend's health in a free fall and doctors starting to discuss her medical directives, Bill, who had spent the previous 19 nights sleeping on a reclining chair in Missi's hospital room, decided to change the narrative.

On June 30, he asked Missi to marry him.

"This is something we should have done a long time ago," he said. "I wanted to give her the best day — the day she deserved."

When Bill suggested they get married on their 11th anniversary, July 16, Missi countered with the Fourth of July.

"And that's what we were planning to do before the doctors told us it might be better to do it sooner," he said. "Missi's condition had deteriorated a bit and they said the sooner we did it, the more she would be able to participate and enjoy it."

That advice came last Wednesday around noon. A fury of activity followed.

"That's when everything went into motion," Bill said. "We had to get a pastor and family to the hospital. We needed a veil. I asked my mom to get the rings. The nursing staff was unbelievable. I went to the cafeteria to get something to eat and when I came back there were streamers in there and decorations in the room and they were making flowers out of paper. They went completely out of their way for us."

Rachel did not know what to think when she heard about Bill's plan for a hospital wedding.

"Initially, I was kind of shocked, but it was nice to see all those people surrounding her," she said. "She was very happy."

At about 7:30 p.m. on July 2, with relatives and friends gathered in Missi's hospital room, Chuck Matheus, an ordained minister and friend of the Carroll family, performed the ceremony.

Missi, sitting upright in her bed and holding Bill's hand, gave an emotional nod when Matheus asked if she would love Bill "through good times and not so good times, through sickness and in health, till the end of time."

When Bill and Missi kissed, a chorus of cheers filled the MICU.

A day later, Dr. Denis Hadjiliadis, the director of the adult cystic fibrosis program at HUP, met with Missi Wright-Carroll to make sure the 36-year-old's end-of-life directives had not changed.

"He asked her if they should still follow her wishes about keeping her comfortable if things didn't get better," Bill said.

When Missi said yes, Hadjiliadis turned to the family.

"The doctor said, 'We need to respect her wishes. I don't see her coming out of this and you are going to have to make a decision,'" Rachel said.

Assured Missi's condition would only get worse, the family reluctantly agreed to take her off the ventilator at 9:45 p.m. Thursday.

"We all huddled around the bed and everyone was touching her, holding her hands and talking to her," Rachel said.

With her husband holding her hand, Missi died at 10:25 p.m.

"I wouldn't change it for anything," Bill said of the wedding. "Knowing the outcome, I would have done it sooner, absolutely, but I have no regrets."

In addition to her husband and sister, Wright-Carroll is survived by her parents, David and Diane Wright, and Catherine and Uwe Pohle; siblings, David, Zachary and Nicholas Wright and Ashley, Megan and Kyle Pohle; grandparents, Robert and Margaret Sutton; and several other relatives and friends.

A funeral Mass and visitation are scheduled for Friday at Our Lady of Fatima Church in Secane and Wright-Carroll will be buried alongside her younger sister at SS. Peter and Paul Cemetery in Marple.

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