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BACKGROUND TO THE STORY OF CHARLIE

On April 1, 2011, John and Abigail Waller learned a new medical term -- one they will never be able to forget -- diffuse intrinsic pontine glioma” or "DIPG”, which is a tumor in the brain stem, the highly protected part of the body that neither drugs nor radiation can adequately penetrate.  

An MRI exam that morning had revealed this fast-growing and inoperable tumor. Without immediate radiation treatment, two-year old  Charlie's life expectancy would be only a matter of weeks. After treatment, the doctors told them, it still might be only months.

Coming originally from Britain, John and Abigail, with their daughter Esther, had moved a few years earlier from Melbourne, Australia, to Michigan, where John took up a position as Associate Professor at Michigan State University.

Today, following his radiation and steroid treatment nearly two years ago, Charlie is still in the so called "honeymoon period" of his disease when life is relatively normal. His condition is monitored by MRI scans every few months, but there is no comforting protocol of treatment and no cure in sight. At some point, usually with little warning, the tumor will start to grow once more, just as surely as the sun sets each day  The only treatment that can be considered is palliative. His parents report his current condition on our "Updates" page.

Determined to look forward with hope, even when their family future is bleak, Abigail and and John have established a new charity, the Art for Charlie Foundation.  Their ambition is to see something good and positive emerge from their own traagedy.  By raising funds from the sale and promotion of art, the Foundation aims to fill gaps in the availability of pediatric hospice care and help other families suffering bereavement from the loss of a child.

At the same time the Waller family themselves need short term help while coping with Charlie's condition. NIH studies have defined the far-reaching economic consequences when a child is diagnosed with cancer (see the references on our "Help" page) and this is a primary reason that the friends of the family opened a "Friends of Charlie" bank account as a channel to provide support during this period.

To help herself and others to understand what she and her family are going through, Abigail records her experience in Abigails Journal by way of imaginary letters to her son, Charlie.  www.ArtforCharlie.org and www.abigailsjournal.com, are companion websites to Abigail's Journal, conveying a similar message, but fulfilling separate needs and objectives.

The Waller family
Charlie, John,  Abigail and Esther (Charlie's sister)