In memory of Quinn

| April 10, 2014 | 0 Comments

Family hopes to build a chapel at the University of Minnesota Children’s Hospital

Marc and Mandy Seymour and their son Camden with a picture of Quinn. Photo by Jim Bovin

Marc and Mandy Seymour and their son Camden with a picture of Quinn. Photo by Jim Bovin

While her baby daughter was in surgery at the University of Minnesota Children’s Hospital in Minneapolis, Mandy Seymour needed to talk to God.

She wanted to go to a quiet place and pray for her baby, but the hospital didn’t have a chapel.

Mandy’s daughter, Quinn, was born with Herlitz-Junctional Epidermolysis Bullosa, a disease that causes severe blistering on the skin and internally. She died after an 8-month struggle with the disease, spending the last five-and-a-half months of her life at the University of Minnesota Children’s Hospital, formerly Amplatz Children’s Hospital.

In memory of their little girl, Mandy and her husband Marc have launched a campaign to raise the $500,000 it will take to build a chapel in the hospital.

“All of us needed something bigger than ourselves and our circumstances to believe in,” Mandy said. “We hope that the Quinn Seymour Chapel will give this to families who continue to helplessly watch their children struggle.”

Compassionate care

Quinn was born prematurely and so unexpectedly that she came into the world in her family’s home in Stow, Ohio. Fortunately, paramedics from a nearby fire station were on hand to help deliver her, Marc said.

Everything seemed fine until a nurse gave Quinn her first bath in the hospital. “When she brought her back into the room, she started apologizing to us,” Marc said. “She said she had never seen it happen before, but that when she had dried her off, she had actually peeled skin off.”

A dermatologist at the hospital was stumped, Marc said. He referred them to another dermatologist, who referred them to the head of pediatric dermatology, Dr. Doug Kress, at the University of Pittsburgh. He works a few days a month out of the Cleveland Clinic, which was close to where the Seymours live.

After Quinn was diagnosed with the disease, her parents were told about a possible treatment option, a bone marrow transplant clinical trial at the University of Minnesota in Minneapolis.

“We prayed the rosary in the car on the way home from the Cleveland Clinic and just cried,” Mandy said.

When they learned that Dr.Kress had treated one of the first children in the clinical trial, it seemed like a miracle.

“For us, that was one of the first very clear inclinations that there was a whole lot greater power, and in our opinion, God watching out for us and really laying some framework for us,” Marc said. “How do you go to three dermatologists in a week and the third one be the only one that knows anything about this disease and have a connection to the only treatment option available in the world?”

Marc visited the University of Minnesota Children’s Hospital when Quinn was 5 weeks old. There were many factors that made them decide to bring her to Minnesota, he said. “When I looked Dr. Tolar in the eyes, I knew he cared about my daughter almost as much as I did, and he had yet to meet her.”

Dr. Jakub Tolar wanted to get to know the family, see pictures of Quinn and talk about how Marc and Mandy were doing. “I knew then that we were going [to Minnesota],” Marc said. They soon packed up the house and got Quinn and their 2-year-old son, Camden, ready for the trip.

Comfort in prayer

On the day of Quinn’s first surgery in Minneapolis, a chaplain greeted Marc and Mandy. He connected them with Father Joe Whalen, another chaplain there. “Father Joe Whalen came that afternoon and met us, met Quinn and prayed with us, and really gave us a [safe] feeling in having such a kind priest there waiting for us,” Marc said.

From then on, extraordinary ministers of holy Communion came daily, and the Eucharist became a lifeline for Mandy.

Once in a while, when Quinn was in surgery, Mandy was able to sneak off to the chapel in the attached “adult hospital” to pray. But it was difficult to get away that long. She was nursing Quinn almost constantly.

“We were trying to find ways to escape and have a quiet place to pray because you can’t pray in a hospital room,” Marc said. “Your child is hooked up to all these machines and they beep at you constantly, and nurses are in and out. We would say the rosary together a couple of times a week with Quinn. Camden would say the rosary with us, and we actually had a couple of nurses join us for the rosary.”

During their stay in the Twin Cities, much of it at the Ronald McDonald House near the University of Minnesota campus, it became increasingly clear to them that a chapel was needed at the children’s hospital.

Mandy found out that it was included in the plans when the hospital was built, but the funding had run out. They decided they wanted to help raise money for the chapel while Quinn was still in the hospital.

Quinn passed away during Holy Week 2012.

“She died on Holy Saturday, and Marc and I both say that we could tangibly feel the Holy Spirit that week,” Mandy said.

“Her suffering was just so similar to Christ’s, the scourging she had, blisters all over her body, and she ended up wearing this crown of bandages, and her right shoulder, her worst wound toward the end.”

“When Quinn died, the project took on new meaning, of course. It was not just a great idea. It was her legacy,” Marc said. “It was to provide a place of respite and a place of hope for families who are going through what we went through. There are families who come there from all over the world, from all different religions, who are fighting for their children’s lives, and there’s not a place of rest.”

“We are very grateful for the Seymours’ support and passion for the creation of this very important space,” said Jen Foss, representing the University of Minnesota Children’s Hospital. “We know it will be well used and appreciated by our families that come from across the United States and the world.”

The Seymours have raised about $215,000 of their $500,000 goal, mostly their own money and help from family.

They are ready to expand their fundraising efforts. An invitation-only dinner is planned for Holy Thursday at the Minneapolis Club to raise awareness and start making connections.

“This isn’t just something that we’d like to see happen some day,” Marc said. “We want it to happen that bad because we believe in it that much.”

For more information, contact Marc directly at (330) 703-7782, or visit their
website at QuinnsCrusade.org

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Category: Local News