Author: Kristen Dattoli

One mother’s story: How rare disease changes your life

dattolifamilyI opened the door to my 10-year-old daughter’s bedroom on a bright October morning. It was a Friday—her “best day” as she called every Friday—and when light poured into her purple room, I thought her swollen mouth was one more symptom of the nasty cold and cough she’d been battling. The antibiotic would kick in soon.

When my daughter looked worse the next day, I took her to her pediatrician, who sent us to the emergency room. A virus, we were told. Come back tomorrow if anything changes. It did: Her eyes were red, she had a fever, and her mouth was blood red and much more swollen. “A bad virus,” the ER doctor told us.

By Monday morning, my daughter had even more sores in her mouth and red spots on her back. Her fever spiked at 104. We rushed to the pediatrician. “I never thought I would have to say this, because it’s just so rare,” the doctor said, “but it looks like Stevens Johnson Syndrome (SJS).”

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