A family honors the life of their baby girl by raising funds to build a chapel at Amplatz Children’s Hospital
Most of the time, they prayed on their knees next to their daughter’s hospital bed. Sometimes, they prayed before a statue of Mary on the hospital grounds. Rarely, when there was a good time to sneak away, they found a quiet moment inside the chapel in the adjacent affiliated hospital.
But while Marc and Mandy Seymour stayed with their infant daughter, Quinn, at the then-brand-new University of Minnesota Amplatz Children’s Hospital building, there was no chapel on site.
Still, during Quinn’s too-short life, the Seymours say, they had never felt stronger in their faith.
Quinn Rosalie Seymour was born August 9, 2011, in Ohio with junctional epidermolysis bullosa (JEB) Herlitz-type—a severe subtype of what has been called “the worst disease you’ve never heard of.” Its hallmark characteristic is extremely fragile skin that blisters or sloughs off with even minor friction from rubbing, scratching, or changing clothes. The blistering also affects the body’s mucous membranes, making eating and digesting food painful and sometimes impossible.
Within days of Quinn’s devastating diagnosis, the Seymours found out about the experimental treatment pioneered at the University of Minnesota aimed at curing EB with a promising but risky blood and marrow transplant. It’s now in clinical trials.
Hospitals near the Seymours were offering EB care, “but they’re not doing EB cure at this point,” Marc Seymour says. “That was a very big distinction. That’s not an option for us.”
As powerful as it gets
The Seymours packed up and temporarily moved to Minnesota when Quinn was 11 weeks old, seeking care from EB trailblazer Jakub Tolar, M.D., Ph.D., a pediatric oncologist at Amplatz and director of the University’s Stem Cell Institute.
“We had two choices for her life,” says Mandy Seymour. “They were to take her home with us and to bandage her the best we could every day and try to take care of her and love her to the best of our abilities and watch her die, or take her to Minnesota to be a part of a clinical trial where she would be the youngest ever to receive a bone marrow transplant and have hope that she could live. The choice was pretty clear for us.”
“When you live in a situation like this with your child, hope is about as powerful as it gets,” Marc Seymour adds.
In Minnesota, Quinn grew strong enough to be accepted into the clinical study, and she received her blood and marrow transplant on December 9, 2011.
The Seymours came from across the country so that Quinn could be treated at Amplatz, and in the hospital they met families from all over the world seeking care. “For a lot of us, it was our only hope,” Mandy Seymour says.
In early 2012, with little or no immune system remaining after her transplant, Quinn struggled with multiple bouts of pneumonia. On April 7, 8-month-old Quinn passed away, surrounded by her family, including her then-2-year-old brother, Camden, at Amplatz.
A place for peace
Through her grief, Mandy Seymour kept thinking about a conversation she’d had with the hospital chaplain several months earlier. The chaplain had told her that Amplatz was supposed to have a chapel but that no donor had yet stepped forward to help build it.
“It was always on my heart,” Mandy Seymour says.
Soon Marc and Mandy Seymour made it their personal goal to build out the nondemoniational chapel in Quinn’s honor. It’s a $500,000 project, and—with the guidance of grandpa Dale Seymour—they have raised nearly $200,000 so far. They’re counting on community support for the additional funding.
Though they live in Ohio, the Seymours say that Amplatz holds a special place in their hearts—not only because it was where Quinn spent almost all of her life, but because they found a place full of people who wanted their daughter to live as badly as they did. The Amplatz community lifted them up in their time of need, they say, and they hope that the Quinn Seymour Chapel can do the same for others in their footsteps.
“It’s not about us,” Marc Seymour says. “It’s about providing a place where people can find a little bit of comfort and a little bit of hope.”
Learn more about Quinn Seymour’s life or donate today to help make the Quinn Seymour Chapel at University of Minnesota Amplatz Children’s Hospital a reality. Gifts of $10,000 or more will be celebrated with special recognition on the chapel’s donor wall. For more information, contact Jen Foss at 612-626-5276 or by email.