Charlie Waller's Legacy: Foundation Works to Provide Needed Care for Families of Dying Children

Charlie Waller, 5, of East Lansing died of a rare brain stem tumor. His parents created Art for Charlie to help other families deal with the loss of a child.

For parents with a terminally ill child, the choice is heartbreaking. Do you focus on ensuring that your child receives the highest level of pain management and comfort care or continue to hope for and work toward a cure?

This is the situation faced by countless families, forced by insurance companies who will often only cover continued treatment or hospice care for a child but not both. One of the goals of the Art for Charlie Foundation, created by the Waller family, is to end the practice of private insurance companies denying “concurrent care.”

“There is always the potential of experimental treatments to work. You never want to give up that hope,” said Abby Waller, mother of Charlie Waller who died of a brain tumor at age five. “Medicaid pays for both and we want that to be the case for everyone.”

Instead, the Wallers want to increase the access to “pediatric palliative care” – a multidisciplinary approach to treat the symptoms and pain while improving life for young patients and their families.

“To this day, I am haunted by the lack of palliative care for children,” said John Waller, a history professor at MSU whose office is filled with photos of Charlie and his sister, Esther. “There is a shortage of physicians who go into this difficult field but you have to have aggressive palliative care when children are dying.”

Since its inception in 2012, Art for Charlie has raised money for grants to families of terminally-ill children and those who have lost a child suddenly. They have paid for funerals and memorials, covered electricity bills and staved off eviction notices – all while families were dealing with the loss of a child. The foundation also gave $20,000 to Sparrow Hospital to fund a pilot study for a pediatric home-hospice service. The foundation continues to maintain the Hospice of Michigan’s “Quality of Life” fund for east Michigan which provides home care and support for bereaved families.

But equally important, Art for Charlie raises awareness about the needs for pediatric hospice and palliative care around Michigan. They host conferences to represent the needs of “medically fragile children.” The second annual conference will be on Saturday Nov. 21 at the Marriott Hotel in East Lansing, titled “Pediatric Palliative Care & Bereavement Conference.” Caregivers, case professionals, state and insurance officials, and parents will discuss what need to be done across the state to better take of children and families coping with the unthinkable.

For Abby Waller, a social worker with Ele’s Place in Lansing, this is an urgent issue. “It is so terribly difficult for families to go through this. They can feel so alone if there is no after care from traditional medical systems,” Abby said. “Our hope is that Art for Charlie will help teach professionals how to catch families before situations further unravel.”

Charlie’s situation was special in two ways, the Wallers said. First he was given a very dire diagnosis of a diffuse intrinsic pontine glioma when he was nearly three but went on to experience a long period of “normalcy” allowing him to play, grow and attend kindergarten at Marble Elementary School.

But at age five, a month after celebrating his favorite holiday of Halloween, Charlie swiftly declined and died on Dec. 5, 2013.

The Wallers feel they were fortunate both to have that long period of relative health with Charlie while avoiding a long, painful decline and death. They remain grateful to the many health care workers who helped Charlie and his family with both his treatments and his death. But those workers were not easy to find.

“It’s vital that there be available physicians, nurses and social workers with specialized, pediatric, palliative, training,” John said.

Through Hospice of Michigan, Charlie’s wonderful oncologist, hospice nurses and social worker, Charlie was able to die comfortably in his home surrounded by his family. That is not possible for many families across the state.

“What we want people to understand is that this is not a Waller family issue. This is a local community initiative,” said John. “Children in this state are dying and we need to support them and their families.”

And for the Wallers, helping those families comes with both a cost and a benefit. It helps gives Charlie’s death meaning but it also reminds them of their own pain.

“It was much easier when Charlie was alive. It felt constructive,” said Abby. “Now it does add more stress but I can’t turn my head away from the need.”

To learn more about Art for Charlie Foundation and the Waller family, go to www.artforcharlie.com.