MINNEAPOLIS (WCCO) – She was only alive for eight months, but thanks to her parents’ determination, her memory will live on.

Three years ago Marc and Mandy Seymour set out to raise $500,000 to build the Quinn Seymour Chapel inside the University of Minnesota Masonic Children’s Hospital.

It will be named after the couple’s daughter, who spent nearly her whole life at the hospital battling a rare and painful genetic skin disease.

“People here in Minnesota and in this hospital knew Quinn better than our family, unfortunately, because she was so sick,” Marc Seymour said.

Almost immediately after Quinn’s birth, in 2011, the Seymours had to leave their house in Ohio and head to Minnesota.

They say the University of Minnesota Masonic Children’s Hospital became home for eight months.

Quinn had Epidermolysis bullosa, or EB, a rare and painful genetic skin disorder with no cure.

The Seymours came to Minnesota so Quinn could be a part of a trial to research and help find a cure for the disease.

“Their skin is as fragile as butterfly wings,” Marc Seymour said of people suffering from EB.

“Your faith is the only thing you have left,” Quinn’s mother, Mandy Seymour, said.

Mandy and Marc Seymour rarely left Quinn’s bedside, but they longed for a place nearby to pray and find solace.

“She couldn’t travel very far, because of the tubes and wires, and I didn’t want to go far from her,” Mandy Seymour said.

When Quinn passed away, her parents began the fight to raise the money to build a children’s chapel in a space already sitting empty in the hospital.

“The hospital told me they had the plans drawn up for a chapel, but they didn’t have the money,” Mandy Seymour said.

It took three years, but the Seymours reached their goal this month, just as they were deciding to move to Minnesota, permanently.

The family will settle in St. Louis Park.

“We just couldn’t imagine not being here for the fun part,” Marc Seymour said. “We did the hard part of figuring out how we were going to raise a bunch of money.”

Hospital Chaplain Tisha Moore said the children’s chapel will be modeled after a similar chapel on the adult side of the hospital.

(credit: University of Minnesota Masonic Children's Hospital)

(credit: University of Minnesota Masonic Children’s Hospital)

The chapel will include a variations of symbolism relating to different religions, but Moore said they will blend in so that no particular religion or customs dominate the space.

“It looks very different trying to parent a child while in the hospital and keep your traditions going,” Moore said.

Moore said the new chapel will include a more child-friendly atmosphere and some allusions to nature.

“Nature and playing outside are big parts of growing up, but unfortunately going outside isn’t even an option for many of the children here,” Moore said.

The Seymours don’t know yet when the chapel will be complete, but they will be there every step of the way.

“I can’t wait to just sit in the corner and watch a child who needs a moment of peace of hope come enjoy the space and find it,” Marc Seymour said.

The Seymours said the chapel will be a place where people of all religions can go, or anyone who wants to have a peaceful and spiritual moment.

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