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Billboards in Michigan bear the image of a toddler, Charlie Waller, four years old in June, 2012.

His picture is part of the Oldham Project, a charity conceived to document the lives of everyone who is fighting a battle for their lives. In their words, it is "a tribute to them and their strength and courage".

Charlie is a lively, apparently healthy child, but a time bomb in the form a brain stem tumor ticks in the background.

Charlie on a billboardBillboard at the entry to East Lansing, Michigan
Click on the image to enlarge

Inspiration for a new charity, the Art for Charlie Foundation providing hospice care for terminally ill children and help for bereaved families, stems from this personal tragedy.

As parents of a toddler with terminal brain cancer, John and Abigail Waller want something of beauty to emerge from sadness to help other families facing this situation.

For them, the Foundation may also be therapy -- a distraction and a hope for something worthwhile beyond the bleak short term future.

     
Charlie Waller - his story

familyCharles Alexander Waller born in Lansing on 15th June, 2008, is a child with two nationalities, British and US. 

After meeting in London, Charlie's parents, John and Abigail, married in Cambridge, Massachusetts, in 2001. A year later, when John accepted his first permanent university appointment as Lecturer at the University of Melbourne,Charlie Waller, age 4 the couple moved to Australia where Charlie's sister Esther was born in 2004.

With an offer to join the faculty of Michigan State University in 2006, John and his family moved the United States, making their home in East Lansing where they found a welcoming neighborhood and a community that has proved truly supportive.

Born two years later, Charlie proved a smart, healthy child with a ready smile. His only difficulty was suspected apraxia, a childhood speech difficulty for which his quick comprehension largely compensated.


In March, 2011, however, he showed worrying symptoms  -- severe night headaches, a stumbling gait, and squinting, cross-eyed vision. A CAT ("Computerized Axial Tomography") scan reportedly showed no evidence of a brain tumour, bringing a false sense of relief for a few days, and alternative diagnoses were explored.

On 1st April, 2011, a week after the CAT scan, he had an MRI ("Magnetic Resonance Imaging") scan and the diagnosis, Diffuse Intrinsic Pontine Glioma, was announced the same morning.  The disease is cruel, since the patient retains full cognitive ability while motor functions fail. Long term survival or extended remission is rare -- estimates ranging from 0% to 1% of patients. (For more detail, go to the DIPG page in the top menu).

Charlie's radiation treatment was completed in May, 2011, having lasted six weeks. The only hope can be in some new untried protocol. Each one is uncharted territory and some are such desperate measures that a patient will only be accepted after the final inevitable stage of renewed progression of the tumor. There seemed hope in a ketogenic diet (see DIPG page), which denies the body glucose, an essential nourishment for a tumor. While the diet had shown promise in reducing tumors in mice, after trying the diet with Charlie a subsequent MRI showed no evidence of his tumor reducing and it clearly compromised his quality of life.

On April 10, 2011, Charlie and his six year old sister Esther (now seven), were baptised at the People’s Church in East Lansing, as a way to mark life itself, to bring the two children into the community and maybe give future comfort to the surviving child.
Charlie's radiation treatment was completed in May, 2011, having lasted six weeks. Long term survival or extended remission is rare -- estimates ranging from 0% to 1% of patients.

Since the completion of his hospital treatment more than a year ago, Charlie has been in the ironically named "honeymoon period", a precious and relatively stable few months of more normal lifestyle. The focus on his quality of remaining life. Charlie has made VIP visits to the Potter Park Zoo in Lansing, Detroit Zoo, and the San Diego Zoo (thanks to Make-A-Wish Foundation) and has received a succession of happy visits from family England.

Charlie started pre-school on September 13 last year, an opportunity to participate in the normal world that he enjoys.  Now age 4 he performs on cognitive tests with the ability of a six or seven year old. It is the cruelty of the disease -- retention of full cognition almost until the end.


The Waller family at the baptism service at

People's Church, East Lansing, Michigan
Waller family baptism
Abigail, Esther, John and Charlie Waller