Program helps sick kids be kids

In the arms of a volunteer coach, 9-year-old Shango Livingston soars from behind the basketball court’s free-throw line, down the lane to hover just above the rim. He drops his ball through. Nothing but net.

“Stick your tongue out, Shango,” calls his mother, Cina, from the sideline. “Stick your tongue out like Michael Jordan.”

Shango is, in his family’s world, already a superstar. The Durham boy has survived seven surgeries for a brain tumor discovered last summer, chemotherapy, six weeks of radiation, infections and additional hospitalizations. But here he is in the gym, starting to reclaim some part of a typical boy’s life.

The organization that helps Shango participate in usual childhood activities, BounceBack Kids, has worked for more than five years to offer seriously ill children outlets that disease might otherwise deny them. Since its inception in August 2003, the Triangle-based group has expanded from offering recreational sports and social activities to a college planning guide and support services that not only help young patients, but their parents and siblings as well.

If a family needs help with yard work or cleaning a house before a child returns home, for example, BounceBack volunteers are there.

“If people are spending all their time at the hospital, they don’t have time to do these things” executive director Lisa Brachman says. “We fill in the gaps.”

But at its start, BounceBack, formerly Hoop Dreams Basketball Academy, was about four children being treated at what was then called Duke’s Brain Tumor Center and three men who wanted to offer them something more than an endless regimen of treatments. Henry Friedman, a neuro-oncologist at the center, Bill Jessup, an area businessman whose only child, Susan, had died of a brain tumor, and Mike Zeillmann, a local basketball coach who has worked with college players, wanted to offer the children a physical outlet that took into consideration their medical conditions but still allowed them to be kids.

Traditional sports leagues were out of the question, so they set up a program that started out teaching basketball tricks and basic skills, Brachman says. It didn’t require a commitment to practices or schedules that doctors’ visits made impossible, took into consideration that they might tire quickly and didn’t rely on them being athletes before becoming sick.

From there, BounceBack Kids has grown to serve more children living with a variety of serious medical conditions, expanded to include personal training services to help with rebuilding strength, coordination and stamina and attracted committed volunteers to support the group’s three-person, part-time staff. Social activities range from trips to local sporting events, theater productions or museums to drumming classes, cooking, and arts and crafts.

With a doctor’s permission, any child from 3 to 21 – chronologically and developmentally – who is living with a serious illness can participate in the sports program. Children who live in the Triangle or Triad or who are being treated at a hospital in those regions are eligible.

Paula Rosine Long, a senior at Duke University, has volunteered with BounceBack since she was in high school. Active with other organizations and working on an honors thesis in English, she still makes time for the group. She and her brother, Moe, a freshman at the University of North Carolina at Chapel Hill, planned this year’s basketball marathon, an annual fundraiser for BounceBack by the two campuses. They also work with individual children, visiting them in the hospital or making gingerbread houses with them during the holidays.

“It’s just my favorite thing I do. I can’t imagine the last four years without it,” Paula Long says. “That’s what makes it so important. It’s the human relationships. I’ve been with some of these kids for years, and their families. To see the love, it keeps me grounded. There’s no comparison.”

On the evening before his slam-dunk on the court at Impact Athletics in Cary, Shango, his mother and two sisters traveled from their home in Durham to enjoy the Harlem Globetrotters with other BounceBack families during a local performance.

Shango, who had played football and basketball and participated in track before becoming ill, says he is glad to be playing again. When he gets tired and has to take a break, everyone there understands.

“I like the people I meet and the activities they have,” he says. Even when he’s in the hospital, the coaches visit, Shango says.

His family’s life was forever changed by a phone call last June. After suffering from headaches and fatigue, Shango had an MRI.

“That night, we got a call from the hospital saying you need to come back in,” his mother says. His father, away on business, scrambled to make arrangements to return home. Friends helped with his sisters. Someone at Duke later suggested BounceBack, and Shango began participating in August.

“With him going through all the treatments and lack of energy, it was a chance for him to get out and bounce a ball. It’s also socialization,” she says. “Between BounceBack and Duke, that’s become our family and friends.”

Andy Ingham’s family has been involved with BounceBack for years. His younger son, Jake, was diagnosed with a brain tumor at 15 months old. Ingham’s wife, Rachel, found the program when Jake was little more than a toddler.

“I thought she was crazy to get him involved in a basketball program, but it’s very low-key and clearly geared toward kids who aren’t typically developing,” the Carrboro dad says.

BounceBack also puts families who are on a similar path in touch with each other. Parents who understand what it means when a tumor cannot be fully resected or who worry that siblings aren’t getting enough attention find support.

“The social part (is) not just for them but for us,” Andy Ingham says. “To have the chance to interact with parents…who are in the same boat. It’s been really good.”