Community Raises Money for Baby with Crippling Disease

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STOW, Ohio -- At the Holy Family Church, everyone is family.

Today, hundreds gathered around the dinner table to support Quinn Rosalie Seymour, a six-month-old baby born with epidermolysis bullosa.

“Absolutely moving. Totally awesome,” said Christine Bailey, Quinn’s grandmother. “I can’t put into words what this is like. It thrills me, but it doesn’t surprise me.”

Epidermolysis bullosa, commonly known as EB, is a rare hereditary condition that gives a person extremely fragile skin.

The fragility of her skin has been compared to the wings of a butterfly, and so her family and friends have become known as her “Butterfly Army.”

In the first hour of the spaghetti dinner fundraiser, more than 235 people of her army came through the church’s doors off Sycamore Drive.

“The love and support today in this room can’t be matched anywhere,” said family friend Kelly McGrath. “I think their prayers have been answered. They’re the type of people that would do anything for anyone.”

Quinn’s medical treatment is so intense, her clothes have to be changed every four hours.

“She has blisters, like in her throat. She has blisters all over her body,” said Phyllis Seymour, Quinn’s grandmother. “She’s literally covered head to toe in blisters in sores and is in extreme pain.”

In December, Quinn received a bone marrow transplant to treat her EB—the youngest person with the condition to get a treatment of this kind.

“One in 50,000 babies is born with this. She’s bringing hope to these babies,” Bailey said. “I think that’s Quinn’s purpose. Quinn is bringing hope to children future children that are born with EB.”

Bailey said the family — parents Marc and Mandy and 2-year-old sibling Camden — will continue to stay in Minnesota while Quinn is recovering from treatment. The family could return home as early as mid-March.