Pediatric Palliative Care
considerations of palliative and hospice care for dying children
are unique. The need for such care is not rare. In the US alone more
than 50,000 children become terminally ill every year, whether
from disease or congenital
many hospitals lack the specially trained staff that are needed,
and this is a gap that the Foundation seeks to fill.
made a grant of $20,000 to Sparrow Hospital in Lansing to
facilitate their pediatric hospice program. This funded a pilot
program which we hope will eventually be the precursor to a full
pediatric hospice facility.
Foundation gave $10,000 to Hospice of Michigan's
Pediatric Early Care program to start a "Quality of Life"
fund for east Michigan, an area that, in addition to East Lansing, includes
the population centers of Detroit, Ann Arbor, Port Huron and Saginaw. Their Pediatric Early Care program fills the gaps of many hospital
based programs and provides much needed home care as well as
support for bereaved families. The fund,
designed to help families in need, matches a similar fund
already established in the west of the state.
Foundation recognizes that loss of a child can have a profound
consequence, changing the dynamics of family life, and that grief is
not finite or "curable" but an ongoing condition. We recognize the
economic consequences of a diagnosis of a life limiting condition
and that this can result in a downward spiral for the family
following the child's death. We try to help by organizing support
groups, encouraging the formation of such groups, providing
individual grants in cases of financial need, and using art to
Locally our workshop/lectures provide an
opportunity for parents who have lost children to meet others
informally, listen to talks, and share thoughts and experiences.
These are intended both as a supplement to conventional bereavement
support groups and also as an alternative for those who do not want
the social commitment of a more formal group. We present these
workshops through a coalition of local child-focused charities. For
more information, see our page on Grief.
As funds permit,
the Foundation awards grants to individual families with needs that
fall outside hospice programs. Often this is to fund a memorial or
provide for some special need the family cannot afford. Sometimes an
individual grant will help to mitigate specific hardship, sometimes
we can help to preserve cherished memories, and sometimes the answer
is to send the family away on a therapeutic retreat or even a simple
Families seeking individual grants should
download our Application Form
to submit online or by mail.
pictures are often memories to be preserved. Sometimes they have a
story to them, and publishing the picture and story helps to spread
the message about the need for hospice care.
children's pictures that can be printed on canvas frame for
exhibition, sending a duplicate to the family. The service provides
a memory for the family but more importantly enables the moving and
inspiring stories of children with limiting illness to be told to
It may be a drawing on a scrap of paper or a crayoned
picture on a placemat, but each is the unique expression of a young
individual, an insight into a child's view of reality. For parents,
a child's pictures are often memories to treasure.
life limiting illness can demonstrate in art feelings they might
never be able to express in words. Publishing the pictures and their
stories can bring comfort to their families. To request to have a
favorite picture published on canvas or board with your child's
story, please email
Charlie was diagnosed with the brain stem tumor
DIPG shortly before his third birthday. Undaunted, he drew pictures
of pirates, dinosaurs and zombies with gusto and unquenchable humor.
He drew this self-portrait of himself as a
pirate a few months before his death
And pictures can be naughty too!
drew this picture only days before he died on December 5, 2013. He
had been fighting with his sister Esther over a toy plastic unicorn.
Later that day, he drew the pooping unicorn. He
told his Mom that it was for his sister's birthday which was some
months later in the following year. He explained that it would make
And Esther did laugh later -- through her tears.