Meet the Kids
Read the stories of these brave children who are battling or have battled DIPG.
“Jack-Jack”, Jack, aka James-William Gregory Demeter
Jack was born August 30th, 2008; my little Saturday night man. His sister Sophie-Marie was just 2 ½ at the time so it was a wonderful time of handfuls! Just some 5 weeks after he was born, we lost everything we had in a wildfire, October 12, 2008—the “Marek” fire, in Lakeview Terrace, Kagel Canyon, and Lopez Canyons in the San Fernando Valley. It was an ominous experience. Jack was diagnosed with DIPG October 28, 2011; he had just turned three. He was the love of my life.
Jack knew his polygons, parallelograms, trapezoids, counted into the hundreds, and was working on his alphabet in phonetic sounds, and in 3 languages. He loved music (he had a tiny violin) and musical instruments. We got him into a preschool program after radiation treatment; they loved him there, and he was so excited to go to school! He loved everything about it, and would say, “I’m here!” each time he arrived. When he got on the bus, he’d say, “you’re P, for Patti! You’re R, for Rose, and you’re M, for Michael!” He would greet everyone in this way on the bus.
Two weeks before he died, he was visited by “two white ghosts,” that he later said were angels because they had wings. They joked with him and made him laugh. They told him that he would have to go with them soon, because he had something important to do. I was beside myself.
After finally struggling with basic body functions, he passed away Sunday, July 30th at 6:40am, and went with the angels. He showed himself to us in many ways in the days recent to his death. He still lets me know he is there with heart rocks of all sizes, and sometimes we play as daisies in a hill somewhere in the clouds of my mind. I don’t know how to go through the rest of my life without him, but to think that some of us are privileged to meet, for a short time, a special guardian angel in a person. I hold on to my gratitude for this, and remember when I can to take life one moment at time, knowing that each one is filled with God, and Jack—now part of the fabric of the Universe again.
Submitted by Jack’s mother, Janet.