Benefit For Baby Battling ‘Worst Disease You’ve Never Heard Of’

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STOW, Ohio -- It's called the worst disease you never heard of, and thousands of children are suffering, including a baby girl from northeast Ohio.

Six-month-old Quinn Rosalie Seymour of Stow was born with a genetic condition called Epidermolysis Bullosa, or E-B.

It is also a life-threatening disease that causes severe blistering and unimaginable pain.

Two months ago, Quinn became the youngest infant to receive a bone marrow transplant, which is one of the treatments for E-B.

Quinn continues to recover at the University of Minnesota's Amplatz Children's Hospital.

Fox 8 has been following this story and keeping in contact with Quinn's parents, Marc and Mandy Seymour.

We spoke with the couple from Quinn's hospital room through video-stream on the Internet.

They said their daughter is currently in isolation and has good days and bad days.

They are doing everything in their power to help their baby girl and to create more awareness about this horrific disease.

"Physicians don't know enough about it.  We were lucky that we got a verbal diagnosis on Quinn when she was just 9-days-old.  And the physician that gave us the diagnosis knows of the program in Minnesota," explained Marc Seymour.

Doctors in Minnesota are hoping the transplant will give little Quinn some relief.

Unfortunately, Quinn's treatment is very expensive -- but you can help.

Supporters are holding a fundraising dinner in Quinn's honor.

Dinner Details:

  • When: Sun., February 12 / 12:30 p.m. through 5:00 p.m.
  • Where: Holy Family Church / 3450 Sycamore Drive in Stow