Children's Palliative Care Coaltion
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About Charlie

Charlie Waller died aged 5 on December 5, 2013, nearly three years after being diagnosed with an incurable brain stem cancer, a diffuse intrinsic pontine glioma, or DIPG.

He accepted his radiation and hospital stays with stoicism, though once, after breaking a wishbone, he confessed his secret wish – that the doctor’s pricks would hurt no more.

He was not “fighting" cancer. With his brain stem tumor that would have been an impossible battle. Instead he saw it as a part of his, a life so focused on love that it was not perhaps that important.

The breadth of his love was unusual, fervently embracing all creatures from repulsive and poisonous bug to cuddly kitten. Like Charlie, many children are generous but Charlie was at the same tolerant of those who are not, explaining that kindness does not come easily to all. Some have to learn it. If giving is easier than receiving, Charlie understood that sometimes you need to be generous when receiving, and would express dishonest delight when given a toy he already had.

Charlie with ice creamA joke, not immediately obvious, was Charlie’s labeling people as “bad guys” and “good guys”, the joke becoming apparent when you realized they were the same. Similarly you would learn that the distinction between what he defined as “real” and “not real” was more blurred than simplistic logic would suggest. comprehension largely compensated. 

This is not an encomium and Charlie was no saint. He could be naughty. He teased his sister and drew naughty pictures. Yet his short life may have had more impact than many that have lasted the full term.

His condition inspired the family to create their charity. The Art for Charlie Foundation promotes the availability of hospice care for other gravely ill children and helps families facing either such a diagnosis or suffering the inevitable bereavement that follows the death of a child. More important over time, however, may be the imperceptible ripple effect of love and kindness without boundaries.

How does a child imagine death?

“I’m scared, Mama,” he told his mother at the start of the final, fast progression of his tumor.

He even dreamed of giving himself a new brain (see the "Giraffe" story).

Charlie suffered plenty from his disease and his last days were made bearable only by opiates. Yet his concern was for those left behind. CharlieOnly a few days before he died, he drew a card for his sister’s birthday which was months ahead, explaining that it would make her laugh. He drew a card for his Dad, depicting a dinosaur with many arms. The arms were to hug his Dad whenever he felt sad.

Charlie died at night on a sofa in his own home in the arms of his mother. He was cuddled tight. It was made possible by hospice, in this case Hospice of Michigan. It’s why we promote pediatric hospice. We all want the best life for our child. Sadly some of us, fortunately very few, will need to want the best death.
 The Foundation continues his spirit by helping other children who face a terminal or life limiting diagnosis and by providing support and comfort for their families.

Oldahm Kids Photo

Charlie's mother, Abigail, records her emotions and experiences on the web site Abigails Journal by way of imaginary letters to her son. It is an important human record of a truly horrifying experience.