© 2019. Child Palliative Care Coalition of Michigan

Art for Charlie Foundation

Out of one family's tragedy, hope and help for others

The Children’s Palliative Care Coalition of Michigan is going strong and we look forward to decades of advocacy and education to improve the welfare of sick children and their families. What follows is a very brief history of how the terminal diagnosis of one particular boy and the commitment and dedication of a grandfather helped inspire the creation of this coalition.

 

Many separate paths converged to make possible the Children’s Palliative Care Coalition of Michigan. One of them began in 2011, when a Lansing-born two-year-old boy called Charlie Waller was diagnosed with a form of brain cancer called a diffuse, intrinsic pontine glioma (DIPG). Inoperable and terminal, the tumor took Charlie’s life in December 2013 at the age of five. In the months before he died, Charlie’s parents, Abigail and John, dedicated themselves to ensuring that he experienced as much love and joy as possible. But this was obviously a time of the most profound heartbreak, for they knew that nothing could save their sweet, kind, loving boy from the tumor’s regrowth. It was also a period of intense anxiety.

Both parents feared the terrible damage that stress, loss and grief can cause to surviving family members, and they dreaded the possibility that their son’s pain would not be eased to the fullest extent possible. They were far from irrational or alone in these concerns. For in both of these areas – support for the grieving and expert pediatric palliative care – there are enormous gaps in services in many parts of America. The families of very sick children endure terrible strains, and many hospitals and hospices do not have the expertise to give children optimal palliative care.

 

A keen awareness of these deficits inspired Charlie’s parents and Abigail’s father, Richard Graham-Yooll, to create the Art for Charlie Foundation in 2011. Thanks to the generosity of friends, community, and especially artists, this organization put on spectacular annual art auctions and conferences in East Lansing, Michigan between 2011 and 2015. The money raised – over $100,000 over five years – advanced the two missions which arose out of Abigail and John’s worst fears. First, funds were donated to help a local hospital to enhance its palliative care services for children.

Second, Art for Charlie was able to help ease some of the financial burdens that families with chronically or terminally ill children experience. It’s an often unrecognized side effect of such a diagnosis – the loss of income when parents reduce their work hours to care for a sick child, face daunting medical bills, have to adapt their homes for a child with special care needs, or take the necessary time to grieve.

Art for Charlie would not have been so successful in raising funds if it hadn’t been for the generosity and support of the East Lansing community; but the lead organizer was Charlie’s loving grandfather and Abigail’s father, Richard Graham-Yooll. It was also Richard who drove the next phase in the development of Charlie’s legacy.

In 2014 the Board of the Art for Charlie Foundation agreed that more could be done to advance the mission of promoting access to high-quality pediatric palliative care across the State of Michigan.

 

The first step was to hold a conference in East Lansing, which drew together over a hundred people: physicians, nurses, social workers, bereaved parents, teachers, healthcare administrators, hospital chaplains, and religious leaders. Soon after, having formed crucial partnerships with Michigan clinicians, hospitals and hospices, Art for Charlie helped to form and fund the Children’s Palliative Care Coalition of Michigan.

The Coalition goals are to advocate for improved access to expert pediatric palliative care and to educate healthcare professionals about the needs of young patients and their families. Such coalitions were already active in a number of other states and one had operated in Michigan until a few years before. The new coalition brought together professionals and parents devoted to sick children, to sharing their knowledge, and pressing for much-needed legislative reform.

Under Richard’s stewardship and with the guidance of an executive board of medics, professionals and parents, the CPCC has grown in its membership and influence in improving pediatric palliative care. In 2019, we are now working towards holding our fifth annual conference. Both Art for Charlie and the CPCC owe much to the passion, drive and commitment of Richard Graham-Yooll, as their co-founder and administrator. Sadly, Richard passed away in March 2019. In continuing to thrive, however, as well as helping Michigan’s sickest children and their families, the CPCC stands as a fitting legacy to a loving grandfather and his beloved grandson.