By W. Reed Moran, Spotlight Health
With medical adviser Stephen A. Shoop, M.D.
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Some of the hottest stars in entertainment recently performed in what might be the best show of this holiday season. But Once Upon A Fairy Tale wasn’t on television, and the actors couldn’t be more pleased.
That’s because the show was broadcast over the Internet to thousands of seriously ill kids in 97 children’s hospitals across the USA.
StarBright Foundation hosted this live fundraising performance in Los Angeles, where celebrities read updated versions of such classics as Little Red Riding Hood, Goldilocks and the Three Bears, and The Frog Prince. The collection of stories is a collaborative effort among 21 stars and children’s book illustrators and will be available in bookstores this holiday season.
Calista Flockhart, Dylan McDermott, Brooke Shields, Jeff Goldblum, Dawson’s Creek’s Joshua Jackson, Cuba Gooding, Jr., and Drew Carey were among those who contributed to the comic and uplifting evening.
“We’re having a great time doing this,” says McDermott, who played the prince turned amphibian. “And I’ve read these new versions of these classics to my own 5-year-old daughter. But we both understand the real value of this project — how a little distraction can help lighten the load of young people in pain.”
“The stories, told from the point of view of the characters, have enormous resonance, honesty and humor,” says Brooke Shields, who portrayed a vamp version of Little Red Riding Hood. “These chronically ill kids deal every day with pain, fear, anxiety and isolation. StarBright’s mission is to help them deal with all this without being condescending.”
The StarBright Foundation is dedicated to the development of various projects that help seriously ill children combat the medical and emotional challenges they face on a daily basis. Through the efforts of Chairmen Steven Spielberg and General H. Norman Schwarzkopf, StarBright incorporates leaders in the worlds of technology, medicine, and entertainment to help improve the quality of life of thousands of children in the USA.
At the event StarBright honored AOL Time Warner Chairman Steve Case with its first annual “Heart of Gold” award for his innovative and continuing contributions to the charity’s mission.
“How often does a retired general get to bellow as Papa Bear opposite Calista Flockhart and Cuba Gooding, Jr.?” asks Schwarzkopf. “But the real joy of my association with StarBright is knowing the impact we have on sick children. StarBright’s programs pull them out of their isolation, hopelessness, and pain one moment at a time. We give them information, a sense of community, and ultimately, hope.”
Spending a lifetime with a serious or chronic health condition can be traumatic, stressful, and physically and emotionally painful. The StarBright Foundation knows this is especially true when the patient is a child or an adolescent.
“Children with serious illnesses face myriad challenges their healthy peers may never experience,” says Joseph P. Bush, associate dean and faculty in clinical psychology at Fielding Graduate Institute in Santa Barbara, Calif., and consultant to StarBright.
According to Bush, these problems include maintaining social development. “Kids with diabetes, leukemia, asthma, and sickle cell disease face the same developmental problems everyone else does, but their disease exponentially compounds these difficulties,” says Bush.
“When they miss school, go on their first date, or repeatedly have to be hospitalized, they often fear disclosing their condition to their peers. Every rite of passage becomes a minefield of secrecy, shame, and fear of exclusion in the midst of normal adolescent turmoil.”
Children and adolescents also face the challenge of managing their own illness, according to Bush. “When a teen has diabetes, that person has to be responsible for testing blood sugar levels, insulin injections, exercise, and diet,” says Bush. “That’s a heck of a load to put on someone who’s already worried about acne, sports, and popularity.”
Bush says that one of the major problems facing seriously ill children is coping with the demands of their treatment. “Many of these kids have to be hospitalized repeatedly and subjected to painful and embarrassing procedures,” says Bush.
Some of the toughest aspects of hospitalization on teens include isolation from friends and being subjected to strict institutional controls. “I see kids on a daily basis who are suffering alone, watching daytime TV, and being told how to dress, eat, and behave in an alien environment,” says Bush. “The entire experience is antithetical to acknowledging their pain and their growing need for independence.”
Further indignities endured by seriously ill children include the pain of being stigmatized by their peers. “If you remember your own childhood, one of the worst things that can happen is being singled out — in a bad way — by your peers,” says Bush. “The teasing, the intrusive questions, the whispering and snickering, all contribute to a sense of exclusion. When illness makes you the odd person out, you eventually even begin to doubt your own self-worth.”
Possibly the worst aspect of having a chronic or life-threatening illness is dealing with feeling a complete lack of control over one’s fate and future. “All these kids inevitably ask the question, ‘Why did this happen to me?'” says Bush. “Those that have illnesses such as cystic fibrosis or cancer also have to deal with the fact that any plans they make for the future are, by definition, highly tentative.”
“One of the most important things StarBright brings to its patient community is the ability to regain control over important aspects of life,” says Bush. “An essential component of a sense of well-being is the belief we are in the driver’s seat with respect to our own destiny.”
With that overarching goal in mind, StarBright has created a number of initiatives that put young patients back in control of their daily lives. StarBright World, a unique private online community, enables children in hospitals and at home to find information about their medical condition in kid-friendly language. It also provides email and instant messaging with peers who are being treated for the same conditions across the USA.
“Kids who communicate with each other via this medium begin to believe they’re members of the human race again,” says Bush. “Imagine the empathy and connection developed between two patients across the country who previously believed no one else in the world could possibly know what they were going through.”
Other groundbreaking projects initiated by StarBright include its Explorer Series, which allows children to learn about their conditions and prospective medical procedures in an entertaining and engaging manner. StarBright Hospital Pals utilizes the children’s character Barney to educate preschoolers about radiation therapy and to provide emotional support during treatment.
Videos With Attitude features teens talking candidly about issues facing the chronically ill, and offers coping strategies for challenges such as returning to school after protracted absence.
“The fairy tales we portrayed were only intended to spread happiness, not teach lessons,” says Joshua Jackson, who played Brooke Shields’ woodcutting savior in Red Riding Hood. “But the lessons StarBright gives aren’t fairy tales… they’re gifts that happen in real life.”