In a world where pain and fear are real, a world where disease is as much a reality as the sun, all of us can use a little escape now and then. But for children in a hospital, how do they escape?
The Starbright Foundation and the persistence of NCI's Dr. Lori Wiener have made it a little easier for the children of the CC to escape -- to Starbright World.
Starbright World is a private, interactive computer network specially designed for hospitalized children and teenagers. It is a place where children with serious and chronic medical conditions can interact with a community of peers from across the nation, helping each other cope with the day-to-day realities of life with illness.
Steven Spielberg, Academy Award-winning filmmaker and chairman of the Starbright Foundation, envisioned this escape for kids, hoping to create a virtual play haven and tool for children to cope with serious or chronic illness.
"Maybe it's just for an hour during the day, but for that hour, kids can escape from their pain and their reality to a place where they can make anything happen," said Spielberg. "They are in total control, and we can give them a place where their imaginations can run free."
Dr. Wiener, coordinator of the pediatric HIV psychosocial support program and of Starbright World here at the CC, was asked to review grant proposals analyzing Starbright World and its effects on children. She was able to use her existing knowledge of the program and her relationship with the Starbright World staff to bring the program to the Clinical Center.
She also credits the support of CC Director Dr. John Gallin and NCI Deputy Director Dr. Al Rabson as crucial to making the project happen.
"The Starbright World has already brightened the world for the Clinical Center's youngest participants in clinical research," said Dr. Gallin. "We are fortunate to have the opportunity to take part in this visionary project, and our goal is to make the experience available to as many of our young patients as possible."
There are currently four operational Starbright World computer units in the CC, with hopes of getting more in the future. They are located in the 9th floor playroom, on the 14th floor, and two on the 13th floor.
"Starbright World provides the children with a distraction to what they are experiencing in clinic," said Dr. Wiener. "It also provides them with entertainment and an opportunity to be able to connect with other children who have, or don't have, the same illness.
"It gives them the opportunity to share concerns, worries, fears, hopes, and dreams with others who are also hospital-based," she said. "And it gives them a chance to have fun, reach out, and be creative in a very safe atmosphere."
It is an escape.
"I played the games. The games are fun, really fun," said Heide Rodriguez, 19, who enjoys Starbright World during her visits to the CC. "It really gets your mind off things."
The graphically stimulating games are but one of the many features of this program. It also allows children to enjoy videoconferencing, specialized chat rooms, private e-mail, medical bulletin boards, and interactive multimedia programs that help explain common medical procedures.
Mary Jane Booth, 11, is another patient of the Clinical Center who plays in Starbright World. Like many other pediatric patients, her days are often filled with medical tests, appointments, and doctors.
Starbright World has not only created a new world for Mary Jane to click into while at the CC, but has allowed her to be a friend to patients in other hospitals and share her compassion and experience with them.
Through videoconferencing, Mary Jane is able to communicate with a boy who is in a Pennsylvania hospital. He was preparing to go through a bone marrow transplant procedure and was scared. Though distance was between them, Mary Jane was able to offer comfort.
"I told him, 'There's nothing to be afraid of. Everything will be alright,'" she said.
Dr. Wiener and the staff involved with Starbright World hope to help as many children as possible enter Starbright World. She is also studying the effects of the program on hospitalized children here and seeks to enroll 30 children in the study. Contact Dr. Wiener or Nataliya Lomakina at 6-3062 for further information about the study or Starbright World. ( by Bonnie Flock)
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