Doug and Lynn Pape, members of St. Luke parish in Brookfield, hold a picture of their daughter Alyssa, who suffered from Marfan syndrome, a heritable disorder. She died in 2005. (Catholic Herald photo by James Pearson)

“And in the end, it’s not the years in your life that count. It’s the life in your years.” –Abraham Lincoln

MILWAUKEE — This quotation was one of many on the storyboards at Alyssa Pape’s funeral in June 2005. The significance of this quote lies not only in the words, which indicate that she lived a full and meaningful life, even though she died at 16, but also in the fact that the quote came from President Lincoln.

Some speculate that Lincoln suffered from Marfan syndrome, the same heritable disorder that took Pape’s life. The disorder attacks the connective tissue that can affect various organ systems, including the skeleton, lungs, eyes, heart, and blood vessels.

According to those who knew her, Alyssa’s years were full of life. She was the youngest child born to Doug and Lynn Pape, members of St. Luke Parish in Brookfield. The other children include four brothers: Steve, 28, Andy, 27, Matt, 24, and Jeremy, 22.

Their relationships were much like other siblings.

“She fought with them at times,” recalled Alyssa’s mother Lynn. “Otherwise her brothers were pretty overprotective.”

Medical concerns arose for Alyssa at birth, when it was discovered that she had orthopedic problems. This was only the beginning. By age 5, Alyssa had undergone three successful open-heart surgeries.

“Alyssa couldn’t go to kindergarten that year because she was still recovering from her surgeries,” said Pape. “But she still wanted to go to school. So I would take her to school with me, because I did the hot lunch program over at St. Luke, and she would wear a little mask and she would sit in the kindergarten room… school was always a haven for Alyssa.”

At St. Luke School, as well as at Pius XI High School, Alyssa was involved in sports. She began by tagging along to her brothers’ games.

“Even if she couldn’t play she was always there on the bench,” said Trish Nunez, parish secretary at St. Luke.

Alyssa became the manager of the volleyball and basketball teams and later joined the golf team. Outside of school she was an avid participant in Al’s Run. In addition to sports, Alyssa was an altar server at church, was involved in the Girl Scouts during grade school, and active in the Ambassador program at Pius. She loved to play the piano and compose her own music. A few months before her death, Alyssa bought a guitar and was hoping to teach herself to play.

“School was where she shined,” said her mother. “But music was her solace.”

Alyssa’s family and friends are dealing with their grief similar to the way in which Alyssa dealt with her health issues. They are taking what God gave them and making the best of it.

Nunez recalls that within days of Alyssa’s death, a friend of the family, Jan Boberschmidt, spoke with her about coordinating a run in Alyssa’s memory. The run became a reality and was held in conjunction with the St. Luke Fall Festival.


Lynn Pape prepares runners for the start of the second annual Alyssa’s Run, held earlier this month. “Alyssa loved life and everyone that was a part of her life,” said Jan Boberschmidt, run organizer. “This run is dedicated to her spirit, her love of live and being one of God’s special children.” (Catholic Herald photo by James Pearson)

The first annual Alyssa’s Run took place on the first weekend in October of 2005. The event was sponsored by City Bank of Mukwonago, Pius XI Athletics, and Ashdon Farms. The proceeds of the run went to benefit the St. Luke Endowment Fund and The Pius XI School Scholarship Fund. The event drew approximately 80 friends, family and parishioners and brought in $2,000.

This past October the run was attended by 60 people and raised $1,700.

When asked what inspired her to chair this event, Boberschmidt referenced the quote on the T-shirts made for the run.

“Alyssa loved life and everyone that was a part of her life. This run is dedicated to her spirit, her love of life and being one of God’s special children.”

“Alyssa was always upbeat,” said Boberschmidt. “Even when she was in the hospital, she didn’t focus on her own troubles… I thought the run would be a great tribute to her.”

In addition to the run, Alyssa’s eldest brother, Matt, organized the Alyssa Pape Memorial Golf Outing held on his sister’s birthday this past Sept. 30 at the Muskego Lakes Country Club. Fifty-six people golfed that day and 20 more came out for the dinner and raffle. The proceeds of this event went to Children’s Hospital’s Herma Heart Center, where Alyssa spent a great deal of her time.

Since her death, family and friends have also continued to participate in Al’s Run. Last year they had an 80-person team for the event. Her brothers made T-shirts and bracelets for the event with the logo “Rally for Ally.” The team raised $3,000 through pledges, which was designated for the Herma Heart Center. In 2006 the number of people on the team increased to 100.

These events have helped family and friends to cope with their grief.

“It is a time to get together and to talk and remember,” said Pape. “And it helps just to know that kids with the syndrome are living longer.”

“Usually in situations like this people will forget,” said Pape. “The initial outpouring from people was unbelievable and I expected that it would taper off some, but it just hasn’t stopped. People still call to talk and the cards are still coming in.”

Not only have these events helped the Pape family through their grief, but their faith and parish family have also been there for them all along the way.

“That community of faith (St. Luke Parish) was there for us from the moment we set foot in that parish,” said Pape. “That was when Alyssa was 4, just before her surgeries. The parish rallied around us; bringing meals, making sure the kids were picked up from school, and taking the boys to sporting events. They held fund-raisers for travel and medical expenses… and they hardly knew us, we had just come out to that parish because our former parish’s school had closed.”

Their previous parish Immaculate Heart of Mary in West Allis continued to be a source of support for the Pape family after they had moved to St. Luke. They held fund-raisers and have continued to be there for the family.

“I have faith that things happen for a reason,” said Pape. “I have to think that somehow this will make us better … and our final reward will be that we will all be together again some day.”