Dina Reilly knew something was wrong when her daughter, who was suffering from a 104-degree fever, broke out in a mysterious rash over most of her body.
But doctors, she said, just couldn’t provide her with answers.
“I was a basket case,” Ms. Reilly said. “First they told me it was a sinus infection. Then they said it was a virus. Then she was tested for meningitis.”
Seven-year-old Maya was misdiagnosed three times after she fell ill March 30, according to Ms. Reilly. It wasn’t until Sunday, April 7, after her fever reached 106, that she was rushed to Stony Brook University Medical Center and her illness was finally given a name.
Maya’s organs were failing from Kawasaki disease. She was immediately put on life support.
Kawasaki disease affects young children. The rare condition causes inflammation in the walls of small- and medium-sized arteries throughout the body, including the coronary arteries, which supply blood to the heart muscle, according to the Mayo Clinic. Its cause is unknown but if it’s detected within 10 days, patients can recover fully within a few days. If left untreated, however, it can lead to serious complications that can affect the heart and is potentially life-threatening.
“We got there just in time,” Ms. Reilly said. “If I listened to doctors, she would have died on my couch.”
Ms. Reilly is now working to raise awareness about Kawasaki disease. In the months ahead, she hopes to share her daughter’s story as a way of educating doctors and parents about the symptoms of Kawasaki, which include severe redness in the eyes, rashes, red and dry cracked lips, swollen tongue, irritated throat and a persistent high fever.
“No kid should go through what my kid went through,” she said. “No parent should go through what I went through.”
Ms. Reilly has already started spreading the word using Facebook. On her page, she updates her followers on Maya’s progress and shares information about Kawasaki disease. Her posts have garnered an outpouring of community support. Southold Town residents are donating home-cooked meals, gift cards and even gas to help the family.
“Every kind of support you can think of is what the community has given us,” she said. “It’s been mind-blowing.”
As for Maya, Ms. Reilly said, “She’s a tough cookie.” Maya was taken off life support five days after being admitted to the hospital. She was released last Saturday, but recovery is ongoing. She will continue aggressive treatment with steroids and aspirin and regular doctor check-ups to monitor her condition.