Did you know that..
- Approximately 400,000 American children are living with life-threatening medical conditions.
- Approximately 55,000 children die annually; half of whom die acute/traumatic deaths, deaths related to profound birth defects, or sudden infant death syndrome (SIDS), while the remaining die of chronic, sometimes lifelong medical conditions.
- 13.9 percent of U.S. children have special health care needs, and 21.8 percent of households with children include at least one child with a special health care need.
- Currently fewer than 5,000 of the 55,000 dying children receive palliative and/or hospice-type services. Delayed implementation of palliative (comfort) care interferes with management of difficult symptoms, prevention of unnecessary pain, end-of-life preparation, effective communication, care coordination, and aligning of care with the stated goals of the child and family.
- Families of children with special healthcare needs often require support in coping with the consequences of their children's conditions.
- More than 50% of children with special health care needs would be eligible for, and benefit from, services provided by COLCC.
- COLCC is the vision of Dr. James Oleske, internationally renowned Pediatrician and Immunologist and Deacon Lynn Czarniecki, former Pediatric Advanced Practice Nurse, who worked together for years at UMDNJ in a program that cared for children afflicted by AIDS. Their efforts led to the realization that a program did not yet exist to provide comfort care for children throughout the continuum of illness, focusing on quality of life for the child and support for the family, including end-of-life care. They vowed to work together to ensure that such a program would one day be made available, especially for traditionally underserved urban minority children.
- The Circle of Life Children's Center, Inc., (COLCC) was incorporated as a nonprofit 501(c)(3) organization in 2002.
- The Board of Trustees, comprised of 13 professionals, provides the organization with expertise in the following areas: Pediatrics, Palliative Care, Neonatal Care, Healthcare Law, Business Practices, Accounting, Fund Raising and Development, Planned Giving, Government Relations and Systems Development, Compliance Law, and Home Care.
- Currently administrative and program space is being provided rent free for a two-year period by the Benedictine Sisters of Elizabeth in a facility on the grounds of Saint Walburg's Monastery in Elizabeth.
- Initial funding to support our program services was provided by The Healthcare Foundation of New Jersey, The Edward W. & Stella C. Van Houten Memorial Fund, Union Foundation, E.J. Grassmann Trust, and Hyde & Watson Foundation. The State of New Jersey, Department of Children and Families subsequently provided a substantial grant over a three-year period.
- Our Neonatal Palliative Care Program was instituted in September, 2007 under the guidance and oversight of Dr. Onajovwe Fofah. Our Bereavement Support Program began on a formal basis in 2008 providing families with both anticipatory grief and grief support following the death of their child.