CASE STATEMENT
Imagine . . .
- You are a single working parent with several children
- You live in the inner city
- One of your children develops a painful incurable illness
- You cannot find anyone to help you take care of him
- There is no place or person you know who can comfort him and help alleviate his pain and his fear
- You do not know what to do or what will happen to him
- You learn he is dying.
Then imagine . . .
- You find a place nearby where your child can be cared for, and where you can visit whenever you are able. You can even stay overnight.
- A place where your child has his own room; where he feels safe, comfortable and comforted; where his pain is eased.
- A place where you come to know the caregivers and can talk with them at any time of the day or night.
. . . a place called “Magnolia House”
At the Circle of Life Children’s Center (COLCC), caring professionals know how to care for children with life-limiting illnesses, relieve their pain, keep them comfortable . . . even put a smile on their faces. At COLCC, our goal is to establish “Magnolia House,” a special home for such children, where parents and siblings are always welcome and even the dog can visit.
It’s about time . . .
Turning a Vision into Reality
Clifford was born with AIDS and an incurable infection. His mother died when he was nine months old. His 21-year-old sister, Clarisse, cared for Clifford along with five other young siblings. No hospice or support services were available to offer help to Clifford or his family in the run-down, high-crime area in which they lived. When he was 4, Clifford's disease progressed, and he was taken by ambulance to the hospital where he died alone, with no family member by his side.
Currently there are no pediatric facilities available for children like Clifford who do not have support systems that enable them to die in comfort at home surrounded by those they love.
Not only do children die from adult diseases such as AIDS, cancer and heart disease, they are also afflicted with numerous other fatal, often painful, illnesses. Studies show that pain in children is managed less effectively than adult pain, and unlike adults, children do not have the maturity, knowledge or communication skills to cope with their illness. In addition, because they are a smaller percentage of the fatal illness population, they are often overlooked by the current healthcare system. Of the 50,000 chronically ill children in the United States who died in 2003, only one in ten received palliative care. In New Jersey alone, about 1,200 of the approximately 1,600 children who die of illness each year could benefit from services offered by the Circle of Life Childrenís Center, Inc. (COLCC).
Hospice programs for adults are based on the Medicare model for seniors with terminal cancer. This model offers specialized programs of care. However, these same services have not been generally available to children, even when a cure is clearly not attainable. Physicians are often so focused on a cure that they are reluctant to admit to parents and to themselves that a child is terminally ill.
COLCC is the vision of James M. Oleske, MD, a caring pediatrician and internationally renowned leader in the fight against pediatric AIDS, and Deacon Lynn Czarniecki, a former advanced practice nurse, now a deacon in the Episcopal Church. Through their work in Newark treating children afflicted with AIDS, they identified an unmet need in the healthcare system, particularly as it affects the traditionally underserved urban child.
COLCC provides comprehensive, culturally sensitive, state-of-the-art programs for children under 21 and their families — primarily in urban areas — both at home and inpatient. Programs including pain and symptom management, child life activities and nontraditional medical therapies, help to maintain the highest quality of life for each child for as long as possible.
Registered in New Jersey in 2002, COLCC received its 501(c)(3) nonprofit status in 2003.