In this article, we are first introduced to a family with a child with a rare genetic disorder, spinal muscular atrophy. The family committed themselves “to providing the often complex and intensive care required to ensure their child’s health,” but they soon learned that the reality of caring for a child with such a disorder “can leave parents and caregivers exhausted, with no place or person to turn to for rest or sleep.” That led the father “to co-found Ryan House in Phoenix, AZ., one of the first dedicated pediatric palliative care homes to open in the U.S. Ryan House is an extension of “home” — providing safe and essential support for children, so their parents and caregivers can take respite, knowing their child is safe and well cared for.” In turn, that led Jonathan Cottor to found the “National Center for Pediatric Palliative Care Homes (NCPPCH) to establish a national collaborative effort to scale, strengthen, and sustain children’s respite, palliative, and hospice home programs across the U.S.” and the related organization, Children’s Respite Homes of America (CRHA). These companion organizations are briefly explained here and will be discussed further in an article in Issue #75.

Parents of Children with Rare Diseases Need a Break.

Kasey Kaler and Jonathan Cottor, MBA, MPH p. 29

Read more here: https://www.nhpco.org/wp-content/uploads/Issue_74_Pediatric_E-Journal.pdf