Local Family's Plight Inspires Pediatric Hospice Fundraiser

Friday, October 12, 2012, 11:59 am
By: 
Stacey Range

Image: Charlie and his sister, Esther. Photograph by Lindsay Wilkinson.

The plight of an East Lansing preschooler entering hospice in a region without specialized care for children facing death has inspired artists around the globe to donate their talents to help create an extraordinary East Lansing fundraising event in support of pediatric end-of-life care in mid-Michigan. The artwork – original drawings, watercolors, acrylics, oils, photographs, prints, pottery, painted ceramics, art jewelry and more – will be auctioned at the second annual Art for Charlie on November 1, 2012, 6-9 pm, at the East Lansing Marriott. Local artists also will be showing works available for sale with a portion of the sale going to the Art for Charlie Foundation. Mayberry Homes serves as the event’s primary sponsor.

The event is named in honor of four-year-old Charlie Waller who was diagnosed in April 2011 with an inoperable brain stem tumor called “diffuse intrinsic pontine glioma” or DIPG. Charlie has survived longer than expected, thanks to great care at Sparrow Hospital where radiation has stalled the tumor’s growth. Sparrow earlier this year named Charlie the 2012 Cancer Survivor of the Year.

“He has no symptoms of progression now,” said Charlie’s dad, John Waller, an associate professor of the history of medicine at Michigan State University. “He has fatigue and problems with motor functions but he’s active, entertaining, bright and humorous, and lives a normal 4-year-old life in many ways.”

But Charlie’s survival is not expected to last. Experts consider 18 months of life past diagnosis of DPIG to be out of the norm. Charlie marked 16 months in August when he was referred to hospice transition care.

Unlike Detroit and Ann Arbor, Lansing does not have specialized palliative/hospice care for children and their families coping with life-threatening conditions, dying and bereavement. While children and their families can access the same hospice services used by adult patients, the National Hospice and Palliative Care Organization says children require comprehensive, compassionate, and developmentally appropriate palliative care. The services also would help Charlie’s parents, John and Abby, and his 8-year-old sister, Esther.

A team of Sparrow medical providers is working to create this service for young patients in mid-Michigan, and all proceeds from the 2012 Art for Charlie will go toward this goal.

Tickets are $35 and can be purchased at www.artforcharlie.com. Anyone wishing to help with the event can volunteer to help in any of many aspects, donate art or raffle items, or become a sponsor. Art for Charlie wristbands and quality note cards featuring pictures by participating artists also can be purchased on the website for $1 each. Participating artists will be announced on the Friends of Charlie Facebook page.

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