Four-year-old East Lansing resident Charlie Waller plays with his godmother and Wisconsin resident Carrie Green on Friday morning, Oct. 26, 2012, at the Waller’s home. Waller was diagnosed with diffuse intrinsic pontine glioma, which is an inoperable brain stem cancer that afflicts mostly young children. Natalie Kolb/The State News
Charlie Waller was more than a lover of dinosaurs, zombies and pirates; more than a once-fluffy-blonde-haired 5-year-old who meant the world to his parents and sister.
In his short life, Charlie Waller left “a powerful legacy by bringing laughter and friendship to so many,” his parents said in a statement.
Charlie, the son of history professor John and Abigail Waller, died cradled in his parents’ arms in his East Lansing home early Thursday morning.
He was diagnosed with diffuse intrinsic pontine glioma, a rare and inoperable brain stem tumor, on April 1, 2011. Most children with the disease die within a year. The Wallers enjoyed more than two years with Charlie after the diagnosis.
During that time, he was the muse for the Art for Charlie Foundation, which holds an annual art auction that this year raised about $60,000 for pediatric hospice care. Nearly $150,000 has been raised in the past three years.
It’s what John and Abigail always wanted: to make something good and beautiful out of something so ugly.
Despite struggling with a growing tumor, radiation treatment, severely depleted motor skills and an experimental diet made almost entirely of fat, his personality blossomed.
He spent his third birthday riding a camel and feeding penguins at Potter Park Zoo. He kept his pet worm in a tupperware container, which he adoringly clutched to his chest. A visit from a family friend’s hamster, Harry Hairball, was enough to bring him to laughter after his final decline started last month.
Even in his last weeks, when the tumor grew so big it gave him headaches, his parents said he sparkled.
He insisted on trick-or-treating, with two school friends, dressed in a zombie pirate costume, even though he felt so ill he vomited once he got home.
Charlie spent Tuesday telling family, “I love you,” until he no longer could speak.
“He lived his last conscious hours as he did the rest of his short existence: summoning friends and family, with weakening hands, to sit with him and to give and receive affection,” John Waller said in a statement.
A memorial service is scheduled for Thursday, Dec. 19 at The People’s Church of East Lansing. A time will be posted on friendsofcharlie.com. Visit the website for ways to help the family. Donations to help other children can be made to artforcharlie.com.
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