We were so pleased to work with the Washington DC based filmmaker Rachel Feichtner of Brave Girl Productions on this video titled "Reframing Hope." So many people have questions about what it means to care for a child with a life-limiting condition. We wanted to tell the story of Cal and her amazing nurses and care team so people could witness the beauty in her life. And for families facing a leukodystrophy diagnosis, the notion of working with hospice and palliative seems frightening. Many people believe working with children's hospice means death is imminent or that you are "giving up."
In the face of the threatened cuts to Medicaid, we also believed it was important for the public to gain a clearer sense of what it means to care for a child like Cal how this funding makes a difference in the lives of medically fragile children.
We invite educators, policymakers, health care workers and others to share and discuss the video. Right now, there are only three in-patient children's hospice facilities in the US, and not enough families receive the support they need.
We want to hear from you about your questions and what you have learned by meeting Cal. Our partners at the Pediatric Advanced Care Team at CHOP and Cal's mom Maria are available to speak about palliative care and children's hospice.