 
|
|
| |
Quick Facts
 | Approximately 400,000 American children are living with life-threatening medical conditions. Approximately 53,000 children die annually; half of these children die acute, traumatic deaths, deaths related to profound birth defects or sudden infant death syndrome (SIDS), while the remaining die of chronic, sometimes lifelong disorders. Currently fewer than 5,000 of the 53,000 dying children receive hospice services, generally for a brief duration. Delayed implementation of palliative (comfort) care interferes with priority focus of preventing unnecessary pain, management of difficult symptoms, effective communication, end-of-life preparation, and coordination of care to achieve the goals of the child and family.
|
| The national expenditure of $630,000,000 to provide effective palliative care for the population of children who die, compared to $1,100,000,000 national expenditure of healthcare costs in the US annually.
|
| The total population of the target counties to be served initially by COLCC (Essex, Hudson, Union, Morris) is 2,416,631, with 555 child deaths in 2003 (latest available data). Of these, approximately 50% 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 to alleviate the pain and symptoms of pediatric
AIDS. Their efforts led to the realization that a program
did not yet exist that would 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 August, 2003.
|
|
The Board of Trustees, comprised of 11 professionals, provides the organization with expertise in the following areas: Pediatrics, Palliative Care, Healthcare Law, Business Practices, Accounting, Pediatric Advanced Practice Nursing, Fund Raising and Development, Planned Giving, Third Party Reimbursement, Spiritual Care, Project Management, Government Relations and Systems Development.
|
|
A highly qualified team of more than 20 professionals from various hospitals and related institutions served as a Steering Committee to provide guidance in the early development of Circle of Life. Their areas of expertise included pediatric medicine, sub-specialties, hospital administration, maternal child health, nurses, child life, bereavement counseling, spiritual care, and pediatric palliative and end-of-life care.
|
|
The Executive Director, a nurse by profession, has had more
than 25 years of non-profit experience, with 11 years as CEO
of the local chapter of a national nonprofit foundation.
|
| Through the generosity of Children’s Specialized Hospital, Mountainside, NJ, workspace was provided pro bono to the COLCC Executive Director for three years.
|
|
Initial funding to support our program services has come
from The Healthcare Foundation of New Jersey, The Edward &
Stella Van Houten Memorial Fund, Union Foundation, E.J. Grassmann
Trust, and Hyde & Watson Foundation.
|
| An offer of space was received from New Community Corporation to house administrative and program staff within their Health Services building, and COLCC moved to Newark in November, 2006.
|
|
Our Neonatal Palliative Care Program was instituted in September, 2007 under the guidance of Dr. Onajovwe Fofah. |
|
|
|
