Red Fred Project



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Storyteller: JJ Lilley
Extraordinary Circumstance: Noonans syndrome & traumatic brain injury
Book: The Fire of Kindness (in-progress)

JONATHONJEROME LILLEY, who prefers to be called JJ, is an extraordinary, entertaining nine-year-old boy, who lives in Olympia WA. JJ has been a fighter from day one, being a preemie at thirty-seven weeks and one day and having a reaction to the bilirubin lights. He was seen by a cardiologist at four months, was given his first heart catheter at eight months, and the second catheter at thirty-one months. JJ then had an open-heart surgery at thirty-five months, having been diagnosed with Noonan’s Syndrome at thirty-three months. Finally, this diagnosis gave us a lot of answers, as to why his heart was having problems and why the other procedures were not working. JJ has experienced numerous health issues, from failure to thrive, as an infant, to even the need for an appendectomy before turning four years old. The chest wires from his heart surgery were removed at age five, and he had dental surgery at age six. Nothing stopped this courageous boy in anything he did. He decided at age three that he wanted to be a dancer, and he began learning and performing all genres of dance. He started to compete at age four, and his love of dance has done nothing but grown. Tragically, at the age of seven, he was hit by a car and suffered a traumatic brain injury. He had to relearn a lot of things; but his love for dance never changed; however, he could no longer compete --- that is, until his mom started a dance/cheer squad for him in Special Olympics. Now JJ has found a new passion, not only for himself, but one that will help and inspire others.