Southold Family Grateful for Daughter's Health on National Kawasaki Disease Awareness Day

For the Reilly family in Southold, National Kawasaki Disease Awareness Day, which takes place each year on January 26, is a day for gratitude — and the need to spread the word about the terrifying illness that had their little girl Maya, now 10, battling for her life.

In 2013, Maya Reilly was just seven years old, a student at Southold elementary school student who suddenly spiked dangerously high fevers and had symptoms of rare disease that initially left doctors baffled.

She was diagnosed with Kawasaki Disease -- according to the Kawasaki Disease Foundation, the condition is characterized by inflammation of blood vessels throughout the body. Kawasaki disease is the leading cause of acquired heart disease in children.

Today, Maya’s mom Dina said her daughter is thriving, a happy child who loves spending time with her friends and family. Maya will turn 11 in June — and every day, her family is eternally grateful for the miracle of her recovery.

“Our brave Maya is a KD Survivor thanks to the doctors at Stony Brook Children’s Hospital who knew the symptoms and treatment,” Reilly said. “KD is often misdiagnosed. Maya was misdiagnosed three times before being treated.”

Maya, her mom said, “spent a week on life support due to the damage the disease had already done to her little body. Thank God, she is a strong healthy 10-year-old with only minor residual issues. No aneurysms. Many kids are not as lucky as Maya. If not treated in a 10-day window KD can cause aneurysms and heart attacks.”

She added, “Being able to recognized the symptoms can and will save a life.”

Back in 2013, as her daughter celebrated a joyful eighth birthday, her mom said, “It was like having her first birthday all over again. Three months ago, we were almost sure we weren’t going to see her eighth birthday. People usually think birthdays are about presents – but we are celebrating her life,” Reilly said.

Tests indicate that Maya’s heart is “great,” Reilly said at the time. Her daughter will follow up with cardiologists and rheumatologists throughout her life. “She still has residual inflammation in her joints, and a lot of pain in her legs, ankles and feet,” she said. “But I’m just happy she’s back to being a normal kid. She’s back to being Maya.”

But although years have passed, Dina Reilly remains devoted to raising awareness of Kawasaki Disease, every day of the year — so that parents can recognize the warning signs before tragedy strikes.

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.

“That’s my purpose,” Reilly said. “I just want to help other parents save their kids.”

As for the the Reilly family, Dina added, “We’re just feeling very lucky.”

For more information on Kawasaki Disease and its symptoms, click here.

Patch photo courtesy of the Reilly familiy.