Storyteller: JJ Lilley
Extraordinary Circumstance: Noonans syndrome & traumatic brain injury
Book: The Fire of Friendship (completed; needs funding)
Words by Dallas Graham
Design & Illustration by Dallas Graham
Photography by Shannon Grey
Edited by Jeri Larsen
Filming by Two Tie Media (Jack Brinkley & Shannon Grey)
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 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 his 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 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 needing 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 grow. 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.
Watch his mini documentary.
Exultant thanks to my friends, Shannon and Jack of Two Tie Media, who captured and imagined and produced this beautiful thing.
Read his book.
COPYRIGHT © 2019 BY DALLAS GRAHAM. ALL RIGHTS RESERVED. NO PART OF THIS BOOK MAY BE REPRODUCED IN ANY FORM BY ANY ELECTRONIC OR MECHANICAL MEANS INCLUDING PHOTOCOPYING, RECORDING, OR INFORMATION STORAGE AND RETRIEVAL WITHOUT PERMISSION IN WRITING FROM THE COPYRIGHT HOLDER.