Little Girl Battles Rare Disease, Community Rallies

When Maya Reilly, 7, first spiked a fever of 102.5, her mom, Dina, did what any worried mother would do -- giving her child Tylenol and Motrin and taking her to the pediatrician.

But, as Maya’s fever continued to climb, and she developed a rash across her body, Dina and her husband Dennis knew something was very wrong.

In fact, what had first seemed like the flu turned into a harrowingly critical experience as their daughter fought for her life.

Despite the fact that different pediatricians had told the Reillys to “ride it out,” and said that their daughter had a virus, questions remained.“If it was a virus, why didn’t her sister have it?” Dina Reilly asked.

With Maya’s fever reaching over 105, Reilly said her daughter’s lips and hands were swelling and her eyes were bright red.“I didn’t feel comfortable with the diagnosis,” Reilly said. “I knew this was not just a virus.”

The Reillys brought Maya to Stony Brook University Hospital. “They immediately said, ‘This looks just like Kawasaki disease,” Reilly said.

According to the Kawasaki Disease Foundation, the rare disease is characterized by inflammation of blood vessels throughout the body. Kawasaki disease is the leading cause of acquired heart disease in children. It’s estimated that more than 4200 children each year are diagnosed with Kawaski disease. Symptoms include a fever that lasts for five or more days, a rash, often worse in the groin area, red, bloodshot eyes, without drainage or crusting, bright red, swollen, and cracked lips and a “strawberry tongue,” which appears to have shiny bright red spots, swollen hands and feet, and swollen lymph nodes in the neck.

“The doctors at Stony Brook saved her life,” Reilly said. When she arrived at the hospital, Maya was fading, her blood pressure was dangerously low, and none of her vital organs responding; she was intubated for five days.

At its highest point, Maya’s temperature reached 106.5 degrees. “I was freaking out,” Reilly said. “I was helping the nurses pack bags of ice to lay on top of her and cool her off. She was in very, very critical condition for a couple of days. It was horrible.”

Throughout their terrifying ordeal, the Reillys took turns at the hospital, so that someone could be at home with their daughter Dylan, 6.

During a time of crisis, the Southold community, Reilly said, carried her family through. “Southold is the greatest town on the planet,” she said. “The doctors saved my daughter’s life -- but Southold saved mine.”

An outpouring of support came from all corners, with the Reillys’ church, First Presbyterian Church of Southold, friends, neighbors and even strangers stepping up to help and donating gift cards, fuel for their home and car, and financial support. “We’re paycheck to paycheck people,” Reilly said, adding that the help was invaluable.

Friends set up a meal chain, so hot dinners were waiting every night; someone else cleaned the house and took care of the family pets. “You name it and they’ve done it,” she said. “It’s unbelievable. It’s just completely overwhelming, the unbelievable, selfless support we’ve received from friends and people we’ve never even met.”

Reilly, who grew up in Southold, said the small town watches out for its own. “When something happens to a kid in Southold, you realize it could be your kid,” she said.

Now that Maya is home and recovering, Reilly said questions remain about possible future heart disease. Maya, she said, was diagnosed within a ten-day window to treat and prevent major damage. Kawasaki disease, she said, if not diagnosed within that time frame, can cause aneurisms and heart attacks in children.

Her goal, Reilly said, is to educate parents about the disease and, most importantly, about the symptoms. “Those symptoms were apparent early on in my visits to the pediatrician but nobody knew what they were,” she said. “Apparently, not all doctors know.”

Following her mother’s heart, Reilly said, was critical. “The lesson I learned it to go with your gut,” she said. “You always have to be your child’s advocate. If I hadn’t, we would have a much different ending to Maya’s story.”

Right now, Reilly is looking forward when Maya, a second grader at Southold Elementary School, “is back 100 percent, running and playing.” Her daughter she said, loves horses, dancing, art and science -- and her little sister. “They’re very close. They take care of each other.”

Most of all, Reilly heart is filled with immeasurable gratitude toward the Southold community who came together to light the way during the dark days of Maya’s illness. “I don’t know what I would have done, without everybody here,” she said. “The amazing people in Southold -- their prayers and support -- are what really got us through.”