What could be more heart wrenching than a child with a debilitating or life-threatening disease, especially those with little to no hope of a cure?
Most hospice and palliative care institutions do not include a committed pediatric team, and, therefore, this is a much-needed addition to hospice care. The needs of pediatric patients are different from the needs of adult patients since they can have a plethora of much more complex genetic disorders as well as serious illnesses, so clinicians are needed with specific training in those areas.
Founder: Jes Street, RN, CHPPN
Jes Street, RN, CHPPN (Certified Hospice and Palliative Nurse), is on the Hospice and Palliative Nurses Association Exam Development Committee, meaning that she assists with writing the exam for incoming potential CHPPN certificants.
Jes was inspired while working at a large children’s hospital, originally doing patient transportation. While observing the oncology unit where children were long-term patients, with cheerfully decorated rooms containing gifts, toys, drawings and photos on the walls that conveyed a feeling of HOPE, her vision was born. Though there may not be hope for a cure, there can be comfort as well as quality family time and the chance to create beautiful memories as opposed to the children and their families spending their last days together in a hospital. Additionally, extended hospital stays are very draining on the families, financially as well as emotionally. The goal is to create an environment that feels like home and offers specialized and personalized care as well as compassion.
The Butterfly House Vision
- A beautiful yellow home with a wrap-around porch overlooking gardens full of fluttering butterflies and a pond filled with colorful, iridescent koi.
- Inside, an open living space with colorful couches, cheerful murals on the walls and shelves full of toys as well as a dining room.
- The main room includes large suites with the main room decorated as a themed child’s room and equipped for critical care with a connecting kitchenette and bedroom for family.
With the assistance of their partner, the Children’s Respite Homes of America, a national nonprofit organization, once they are set up as a 501(c)(3) organization, they will be able to begin applying for grants. They are also planning community events to reach the local communities of children and their families that need help, such as a Firewalk for Empowerment, entitled “I’ll Walk Through Fire for You,” with a silent auction and live music on April 12, 2025 (location to be determined, updates to follow on website below), as well as a Holiday Poinsettia and Christmas Cactus Fundraiser from now until December 9. See https://www.zeffy.com/ticketing/holiday-plant-fundraising-sale-for-butterfly-house-pediatric-hospice. There are also bereavement brunches in the works for parents who have already experienced a loss.
Currently, they are working on narrowing down the exact area to build as well as looking for an architect and builder.Much-needed and appreciated donations would be instrumental to making this vision a reality. See more at www.butterflyhousehospice.org or donate to this worthy cause at www.butterflyhousehospice.org/donate.
