Program areas at Rays for Rare
Uplifting Support - Uplifting practical support to medically fragile children and their families. Uplifting support included the following: weekly lawn care, monthly house cleaning, grocery delivery service, hospital cafeteria card for while medically fragile children are in the hospital, welcome boxes, support groups for caregivers and bereavement support, sibling activites, events to bring families together. Due to the lack of nursing and respite support the majority of our families are single income as one parent is the caregiver. More than half of the familis we serve have and annual household income less than 50% area average annual income (US Census), 36% are considered very low income (HUD) and 19% are below the poverty line (PL) vs 8% in the general population. The number of medically fragile children support by Rays For Rare increased by 26% serving 180 families.
Education and Awareness: Through our research, we have identified over 4,000 medically fragile children in the radius of our local childrens hospital. Employees, board memebers, volunteers and community advocates provided education and awareness to the need of pediatric palliative care. Our local childrens hospital started their first pediatric palliative care program and Rays for Rare joined in collaberation and continues to advise. Rays for Rare sits on several advisory committees to help guide, educate, and share awareness of the children we serve. In addition Rays for Rare collaborates with several national organizations to educate them on rare diseases, pallative and bereavement support. We provided community education and awareness during the year through a series of storytelling videos sharing our families journeys.
Families with medically fragile children go above and beyond typical parenting, they are also caregivers for their children. Every moment counts and we aim to provide some relief, compassion and community to make the journey a little easier. Our support boxes include comfort items and a cafeteria card that is refilled so they always have access to food when at the hospital. We offer 4 support groups a month to provide mental health support. We host at least 10 events per year for parents, siblings and whole family events to offer community on an isolating journey.