Dr. James Oleske is a world-renowned pediatric infectious disease immunologist in Newark, who is committed to caring for underserved families with children suffering from serious and terminal diseases.
Anthony Thomas didn't know much about Dr. James Oleske, nor could he remember the little he had read.
He may have missed the part about Oleske being a pediatric physician in Newark for 46 years. And he probably didn't catch that Oleske is a world-renowned pediatric infectious disease immunologist who discovered that infants could be infected with the HIV/AIDS virus at birth.
Thomas, a Newark resident, only needed to know this much about the man that families call "Uncle Jim."
"He's one of God's helpers," Thomas says.
Officially, Oleske is the co-founder of Circle of Life Children's Center, a palliative care program that helped Thomas' family - and hundreds of families before them - through the darkest hour in their lives.
For Thomas, it was his 17-year-old granddaughter, Latierra, who died after an unsuccessful bone marrow transplant last year.
If there's a ray of warmth during these times, Oleske's center became the shoulder for families to lean on when his career shifted 13 years ago to relieving pain and suffering from illnesses that shorten children's lives.
"They shouldn't have to suffer unnecessary pain and the families need to be supported,'' Oleske says.
He was drawn to end-of-life palliative care during the HIV/AIDs crisis, while treating children who had the disease. In his work at the former University of Medicine and Dentistry of New Jersey-New Jersey Medical School in Newark, Oleske says palliative care didn't exist as children were dying as a result of complications from the HIV/AIDs virus or other serious terminal diseases.
"I didn't realize how important it was to give pain management,'' he says. "I didn't realize how important it was to not only try to treat the disease as best as you can, but to understand how you care for a child adolescent with a fatal disease.''
As the number of new HIV/AIDs cases declined since the 1980s, Oleske became certified in palliative care and started Circle of Life in 2002 with Lynn Czarniecki, a former pediatric nurse with whom he had worked while caring for children affected by AIDS and other infectious diseases, and others. The program is now at Rutgers New Jersey Medical School in Newark and at Magnolia House, a facility in Elizabeth where families can receive bereavement counseling and other support. When sick kids leave the hospital, the program kicks in to determine the needs of a family at home.
Since its inception, Circle of Life primarily serves low-income and underserved families in the greater Newark area, which Oleske has called home since he started his career in the city.
"I saw Newark as the place where I could do the most good,'' he says.
Executive Director Samuel Varsano says the organization survives on donations, but more funds are needed to cover costs that Medicare won't pick up for palliative pediatrics.
"What makes this even more difficult and harder to understand is that, wherever you are in New Jersey, everyone understands that if you have an adult in your family, a parent, a grandparent a brother or sister who develops a terminal illness, we all automatically turn to an extremely wonderful option called hospice,'' Varsano says.
"Hospice is recognized and largely funded by Medicare. Medicare does not have a similar program for palliative pediatrics.''
There's no billing code for the work this group does, and even less for expenses that families incur caring for a sick child.
Last year, Varsano says Circle of Life provided palliative care to 180 children, mostly in Newark, and bereavement support to 65 families whose children eventually died. Since 2006, they've cared for 600 terminally ill infants, children and families with a network of social workers who go to homes, hospitals and wherever else they're needed.
On Sept. 28, the organization(circleoflifenj.org) has its annual major golf fundraiser in Basking Ridge. Perhaps there is a philanthropic fairy godmother out there that will adopt it to further the cause.
Doris Rogers, of Highland Park, can't say enough about Circle of Life and Oleske, who will always be "Uncle Jim'' to her, too
She's known him since the mid-1980s, when her son, Joseph, was diagnosed at age 2 with Wiskott Aldrich Syndrome, a blood disorder that causes internal bleeding.
Rogers says there were hardly any programs for palliative pediatrics and she remembers how Oleske fought for her son's treatment when he was in pain.
"He treats you like family,'' Rogers says. "You very seldom see that in the medical world.''
She credits Oleske's many years of care with helping Joseph to live to be 22. He died in 2007, but Oleske and Rogers stay in touch.
A year has passed and Circle of Life is still involved with Anthony Thomas.
On the day he met Oleske for the first time, Nicole Alston, a social worker with the group, held onto Thomas' hand as he fought back tears recounting his granddaughter's five-year fight.
When Thomas was done, Oleske walked over to shake his hand, resting his left hand on the man's shoulder.
"Do what you can do to make it stronger,'' Thomas said to Oleske, speaking of the organization.
Don't worry. He and the staff will.
Barry Carter: (973) 836-4925 or bcarter@starledger.com or nj.com/carter or follow him on Twitter @Barry CarterSL