Community rallies to support Carmel couple fighting rare diseases


By Desiree Williams

Elizabeth Quinby’s life changed drastically in 2013 when she was diagnosed with polycythemia vera, a rare blood cancer. Polycythemia vera is a slow-growing cancer in which a patient’s bone marrow creates excess red blood cells, which thickens the blood and causes clots.

Scott and Elizabeth Quinby of Carmel are both fighting rare diseases. (Submitted photo)

At the time, Elizabeth owned two cafés in medical buildings and her husband, Scott, was working for a plastics company. When she stopped working, Scott took over the household.

“He was really good at everything he was doing,” Elizabeth said. “He was positive. He was upbeat. He was helpful. He took care of everything.”

That all changed Jan. 14 when Scott was diagnosed with hemophagocytic lymphohistiocytosis, an immunodeficiency that causes the body to make too many activated immune cells. It started with strep throat, but he didn’t improve with prescription medicine. After running tests during multiple visits to the emergency room, Scott’s doctor said his results were off the charts and he had to be admitted to the hospital, Elizabeth said. He hasn’t come home yet.

“His immune system is so shot that if (there is) any immunosuppressant in his body, if anything shuts down slightly, he will have the hardest time to get rid of it,” she said.

Neither Elizabeth nor Scott’s disease has a cure. Doctors continue to experiment with treatments for Scott until they are comfortable letting him go home. Elizabeth will continue to take chemotherapy pills until her body corrects itself, which she said has never been done before.

Now, the bills are stacking up and Elizabeth’s daughter, Paige, is taking time off of school to help her family.

Charlotte Otero, a family friend, started a GoFundMe to assist the Quinby’s with their daily medical expenses. The fund has collected more than $10,000.

“I’m speechless,” Elizabeth said. “I just want to cry. I’ve never had anyone do this for me.”

To donate, visit


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