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A 'Magic' Premiere Fulfills Cheltenham Teen's Dying Wish
Rina Goldberg dreamed of walking down the red carpet next to the big name actors who would star in the movie she wrote.
The Cheltenham teen insisted it would happen, even when her parents suggested that it might be just as nice with college students; even when it became clear that she would succumb to a debilitating and often terminal disease that took her life when she was 15 years old.
The unbending optimist was right. But it was her parents who flew to Hollywood to finish what she started, and the carpet at the May 18 premiere was actually purple, her favorite color.
Her movie, The Magic Bracelet, will be shown next in Philadelphia, at a June 2 screening organized by a friend who suffers from the same illness.
Rina was already frail and homebound when a family friend suggested that she help him come up with ideas for his movie production company. Within a few days, she'd crafted an outline for The Magic Bracelet, a fantasy adventure story of two long lost sisters. Like her, one of the girls has mitochondrial disease, a condition usually caused by a genetic defect that impairs cells' ability to produce energy, leading to overwhelming fatigue and, eventually, more severe problems such as strokes or organ failure.
Just before Rina died in December 2010, she asked her mom to promise that her film would get made.
Stacy Goldberg pitched the script to anyone she could think of before discovering the website of the Los Angeles-based Make a Film Foundation, which helps hospitalized children with chronic conditions produce mini documentaries and selects one future filmmaker each year to create a 20-minute narrative with professional volunteers.
At first, the group's executive director, Tamika Lamison, turned Goldberg down because her mission was to include the children themselves in the filmmaking process, especially for the longer narrative. But, Lamison said, Rina's story got to her.
Since Rina was already gone, her parents acted as her stand-in. They reviewed the 25-page script that Academy Award-winning writer Diablo Cody (Juno) had adapted to make sure it maintained Rina's vision.
Then, after months of planning and waiting, Stacy and Ari Goldberg flew to Los Angeles in December 2012 for four days of intense shooting.
More than 100 crew and cast members volunteered their time for the production, including director Jon Poll (Charlie Bartlett, Meet the Fockers) and actors Bailee Madison (Parental Guidance), Academy Award-nominated Hailee Steinfeld (True Grit), Kaitlin Doubleday (Catch Me If You Can), Jackson Rathbone (Twilight franchise), J.K. Simmons (Spiderman) and James Van Der Beek (Dawson's Creek).
Despite all the credentials on the set, there were no divas and no egos, said Stacy Goldberg, a speech therapist. As the volunteers learned more about Rina, "they got so connected to her." Many of them came up to thank her for allowing them to contribute to the project, she continued.
Wherever the production team went, a large framed photo of Rina came, too. They brought the picture along to location scouts, to production meetings, even out to lunch. On set, the image had a place of honor propped up in a director's chair or right behind the camera.
"We'd hear these crew members who we'd never met before — 'Hold on, wait, wait, wait, where's Rina?' Not, 'Where's the photo of Rina?' " Goldberg recalled.
When they first saw the script acted out, Goldberg said, "it was rough to listen to those lines and know that she physically wasn't hearing them." On the other hand, Rina would have been frustrated, her mother said, because she wouln't have been up to the 12-hour workdays.
Still, there were so many coincidences that made them think of Rina that it felt like she was there in spirit, finally free of the burden of her body, Goldberg said. For example, they found out that the dog who appeared in the film happened to have a sister named Rina.
"Who names their dog Rina?" Goldberg wondered.
Though Lamison, the foundation director, had never met Rina, she said she started to create her own relationship with the teenager while producing her movie.
"That was a very special thing, like she was here almost," said Lamison.
Even in post-production editing or handling the logistics of the premiere, "I would meditate and ask her when I felt like I didn't know what to do." And, she added, "I know this is a little crunchy-granola, but I would always get an answer."
Nearly a half a year later, The Magic Bracelet was finally ready to premiere. Once again, the Goldbergs flew to Los Angeles to represent Rina — this time from Columbus, Ohio, where Ari, the former director of the Jewish Community High School at Gratz College, had found a job as chief administrator for a Conservative synagogue.
Watching the finished product on the big screen was transformational and everything Rina dreamed it would be, Stacy Goldberg said. In the film, her daughter's presence was "palatable and powerful."
"It was truly Rina's night."
Even though the Goldbergs moved in February, Philadelphia had been Rina's home and the logical choice for the first post-Hollywood screening. Plus, Rina had a "mito sister" in Huntingdon Valley who was eager to help organize it: 24-year-old Hayley Leib.
When the girls first met years ago, Hayley hadn't yet been diagnosed with mitochondrial disease. But her mother, Randy, formed a tight bond with Rina's mom as both girls went in and out of the hospital. At one point, Hayley was in the hospital for eight months. It was the Goldbergs who suggested that Hayley consult with their doctor in Boston to test for mitochondrial disease.
"Family's great but they don't necessarily live our life on a daily basis," Randy Leib said. "We don't know what tomorrow will bring, we kind of live for today."
Even though the girls were often too sick to see each other in person and Rina was several years younger, "she seemed to have this ability to know what was going on with me without even asking," Hayley said. "It was easy to relate to her and be with her because she got it, which a lot of people don't."
They sent messages to each other through their mothers, who spoke on the phone daily, sometimes twice a day.
For Hayley, organizing the Philadelphia premiere was not only a chance to honor an inspiring friend but to raise awareness of a condition that often falls under the radar.
"This is Philadelphia, you have some of the top hospitals and doctors in the country and I would have to explain to them what my disease is, which is just unfathomable to me," Hayley said. "It's not as rare as people think. There are plenty of people who are walking around who have it and don't know because they go to doctors and the doctors have never heard of it, so how can they help anyone?"
Television host Marc Summers, who emceed a local fundraiser for The Magic Bracelet last March, is expected to do the same for the upcoming premiere at Old York Road Temple-Beth Am, where Hayley's dad, Robert Leib, serves as the head rabbi. The June 2 event will begin with a silent auction and a performance by American Idol finalist LaToya London. In addition to the 19-minute film, the Goldbergs and Lamison will speak about the project and show a behind-the-scenes documentary about the making of the movie. Proceeds from the event will go to the film foundation to continue granting wishes to kids with serious illnesses.
The whole project has already gotten bigger than they ever imagined, Ari Goldberg said, "although the irony is that Rina probably did imagine it."
Through the movie Facebook page, they've already received requests to screen the film from all around the world, including northern Ireland, Switzerland and Chile. One grandmother wrote a message describing how her 6-year-old granddaughter with mitochondrial disease started to cry after seeing Bailee Madison with a feeding tube in the movie trailer, saying, "Look, she's got a tube-y like me."
After the Philadelphia premiere, the Goldbergs will travel to a United Mitochondrial Disease Foundation conference in Newport Beach, Calif., to present the film in mid-June. Lamison also plans to enter it into the festival circuit for short films and look into licensing it for television distribution.
Rina wanted to give kids like her "the feeling that they're not alone, they're not strange or weird," her father said. She dreamed that her movie would give them hope "that they don't have to be a victim to their disease, whatever it is. So that's where we go from here."