Currently, there are about 4,000 hospices in the United States, but sadly only a handful of them care for children. Close to 90% of children die in a hospital setting isolated from friends and family. Funding for Pediatric hospice and end-of-life care services is currently inadequate, leaving programs that are willing to care for children scrambling to find donations to cover the cost. Currently, to care for these children, 80% of the cost must come from donations and philanthropic funding.
Parents of children with a terminal illness have only two choices when faced with the fact that treatments are failing to work and, medically, nothing more can be done for their child. They can return to the hospital when their child’s pain is unbearable and their symptoms are unmanageable or they can remain home with their child, most often without hospice or any end-of-life care and support.
Children’s Hospice of America wants to ensure that children have the same opportunities as adults with hospice care and support. A child’s death is unique and each one deserves dignity, peace and support beyond what is currently available. The power of CHOAF lies in our ability to bring bereaved parents, medical experts, and hospice organizations together to use our strength and passion to effect change on a national level.
CHOAF will host an annual event in cities across the United States; The Butterfly Walk/Run & Flutter. This event will bring communities together to raise awareness and money for Children’s Hospice and Palliative (comfort) care. With the diverse experience and connections of our staff and Board of Directors, we will develop and implement a major nationwide walk that will benefit existing hospices that care for children and for the hospices and programs that are interested in starting care for children. 100% of the money raised will be given back to each community where the walk is held.
This event will bring people together to celebrate the lives of the children we have lost, raise awareness to the need for Children’s Hospice and end-of-life care and raise resources to directly fund new pediatric end-of-life programs to care for the children and their families. The impact this national event will have will be incredible!