Steven’s friends share their stories

Jerome C. Pandell

Although Dance Marathon 2002 did not have guest appearances from Jeff Probst and Scott Wolf, dancers said they were motivated by something most of them called far more emotional: testimonials from Friends for Steven families who have been impacted by the effects of neuroblastoma.

Often shedding tears and giving the speakers standing ovations, dancers paused every few hours to listen to the stories of the Newkirk and other families whose children have battled the disease.

In his testimonial about the spirit of Steven Newkirk, the child for whom Friends for Steven is named, pediatric oncologist Howard Katzenstein discussed his bond to the child both as a doctor at Children’s Memorial Hospital, which handles the majority of neuroblastoma patients in Illinois, and as a neighbor.

When he moved across the street from the Newkirk family, Katzenstein said Steven hoped he would never have to return to the hospital since his new neighbor was a doctor.

But Steven had a relapse and returned to the hospital and died in 1999 because of complications from neuroblastoma treatment. Katzenstein said Steven tried to make the best of his time there, however, and even played a joke on the doctor for his 8th birthday.

“Steven asked me to sing him ‘Happy Birthday, ‘” said Katzenstein, who also serves on the executive board of Friends for Steven. “But he had pressed the nurse’s call button so all the nurses and doctors and hospital staff could hear me.”

Katzenstein said the dancers should be inspired not only by the children who have successfully fought neuroblastoma but also by those who still are battling the disease.

“What you’re doing is proof that everyone can make a difference,” Katzenstein told the dancers. “These dollars are going to help cure that child out there playing soccer or who maybe has not even been born yet.”

Comparing the difference between hearing the testimonials this year with last year’s celebrity focus, Weinberg sophomore Tanya Colburn called the family appearances “sobering and meaningful” and said they put DM’s purpose into perspective.

“Last year, we had a lot of celebrities and not as many testimonials,” Colburn said. “But (this year) rather than hearing Scott Wolf speak, we got to hear from the Newkirk family.”

DM Executive Co-chairwoman Michelle Madigan echoed Colburn’s sentiments, saying the speakers conveyed the “power of love,” this year’s theme, during the 30 hours of dancing.

“We didn’t need celebrities with the amount of speakers we had,” said Madigan, a Medill senior. “They were our celebrities.”

Beth Newkirk, Steven’s mother and co-founder of the charity, said Friends for Steven has developed strong bonds with DM throughout the year. The groups have merged into a family with a common purpose, she said.

DM’s check of about $380,054 given to the charity at the end of the event is more money than Friends for Steven has raised all together since its founding in 1997, she said.

Newkirk said the organization’s immediate goal is to fund research that will develop less toxic treatments for children with neuroblastoma, like Francesca “Frenchie” Persico. Francesca’s mother, Chris Persico, told dancers Saturday that the debilitating treatments associated with a neuroblastoma relapse give children almost no chance of survival.

Ray Asher provided the event’s last testimonial Saturday night, telling dancers that although treatments for his son Javi worked initially, soon he couldn’t walk five feet without falling. Better treatments could allow him to continue hitting overhand fastballs, but still be able to run the bases after, he said.

“Neuroblastoma research is so underfunded. This event is such a coup,” Asher said. “As long as our children are alive, (my family) hopes there’s something around the corner at Children’s Memorial Hospital.”