Toward the end of her life, 15-year-old Rina Goldberg declared her bedroom to be a no-crying zone. She tried her best to enforce that policy, too, said her father, Ari, director of the Jewish Community High School at Gratz College.
"If you're going to cry, leave the room," the Cheltenham teenager once told her grandma.
Even as a debilitating disease shut her body down, Rina refused to let her spirit suffocate. Frail and homebound, she plugged away at a movie script that a family friend had inspired her to start, determined that it would one day make it to the big screen.
It's been a little over a year since Rina died, but her parents haven't given up on a promise to make her movie dreams come true. With the help of a nonprofit foundation in Los Angeles and a community fundraiser on March 1, they expect an adapted version of Rina's film to premiere in Hollywood this June.
Rina struggled with sudden bouts of pain and lethargy since she was a little girl. She would walk just under a mile from their home to their synagogue, Young Israel of Elkins Park, without a problem, but then her legs would swell up and turn beet red, rendering her unable to make the return trip, her father remembered.
At first, doctors couldn't pinpoint anything other than Asperger's syndrome, a high-functioning form of autism that doesn't normally affect physical health, Goldberg said. Every test she took came out negative.
Finally, at age 10, specialists diagnosed her with mitochondrial disease, a condition in which cells cannot convert food and oxygen into energy, leading to overwhelming fatigue and, eventually, more severe problems such as strokes, diabetes and organ failure.
Even though there's no cure, it's not always fatal, Goldberg said. Her doctor in Boston would tell them, "There's always hope."
But Rina's health deteriorated quickly. At age 12, she suffered a stroke and lost her ability to drink, eat and read. She continued attending public school with a feeding tube and a nurse until that, too, became exceedingly exhausting. After missing most of her classes that fall, she switched to a home tutor.
When the pain became unbearable, Rina sought solace in the music of folk singer Debbie Friedman, who had also become a personal friend since her parents took her to a concert years ago.
Before the show, Ari Goldberg recalled, Rina was a wreck. She never liked crowds, a common trait among people with Asperger's, and sat there on the verge of a panic attack, sweating profusely with her eyes squeezed shut. As soon as the first note played, "her eyes opened, and she was just dancing in the aisles the whole concert," Goldberg said. "We didn't know Debbie, but she seemed the type of person who would like to hear a story like that." So they sent her a letter and received a personal response. Friedman arranged for Rina to get special access to future concerts so she wouldn't have to deal with the crowds, and the young girl even appeared on a documentary about the healing effects of her music.
In early 2009, a virus that sent Rina to the hospital left her unable to walk. She slept hooked into a machine that bore the burden of moving her lungs. A few months later, another stroke wiped out her entire memory.
Despite that setback, Ari Goldberg said that Rina became so adept at picking up where she left off that he sometimes forgot about the memory loss until he brought up something that had happened years ago.
"She'd look at us and say, 'Um, amnesia?' " Goldberg said. "It got to the point that we were like, listen if you don't laugh about it, you're going to cry."
Since Rina couldn't exert much energy, she immersed herself in books on tape, movies and TV shows. She had an unbelievable ear, her father said, and often predicted the finalists on American Idol.
That summer, Goldberg's former co-worker, Mitch Eiven, suggested that Rina help him come up with ideas for his movie production company. Within a few days, she'd outlined "The Magic Bracelet," a story of two friends, one of whom has mitochondrial disease.
She was careful not to write a sob story or documentary, though one of the characters references a friend named Rina who didn't make it, Goldberg said. However, the disease was a central element of the plot because her ultimate goal was to move viewers to learn more about it. She often got frustrated when she saw references to well-known maladies like cancer on television while her condition remained relatively obscure, despite the fact that an estimated 1,000 to 4,000 children are born with it every year.
Though she could no longer read, she could still write for short bursts of time. She typed emails to Eiven or dictated "movie moments" over the phone.
By the end of the year, she was on a ventilator and unable to leave the house for anything other than doctors' appointments. Still, she pushed Eiven to help her produce her movie. He recruited a web designer to donate a site about the project in hopes of attracting potential investors. In June 2010, Rina led a read-through of the script at her home.
Eiven and other adults tried to be realistic, mentioning that it would be wonderful even if she secured a television special, said her mother, Stacy Goldberg, a speech therapist for United Cerebral Palsy. "She would say, 'No, dream big — Hollywood red carpet premiere,' because that's how she saw it," Stacy Goldberg said.
At her last visit to her specialist in Boston that fall, he didn't promise hope when they left.
"Even then, because Rina was Rina she had so much positive energy she gave to everyone," her mother said. It was a gift, she continued, that allowed them to truly focus on "living in that moment with pure and honest joy and appreciation of just being together."
By that time, Rina knew she wouldn't be around to see her movie, her parents said. With the encouragement of hospice nurses and therapists, she asked her mother to promise that she'd see the project through.
Friedman was performing in London when she heard the news of Rina's death. She called as soon as she got back to the States, Ari Goldberg said, and wound up in the hospital herself the next day. The singer succumbed to pneumonia on Jan. 9, 2011.
Heavy with the combined grief of losing both a daughter and a family friend, Stacy Goldberg set about pitching Rina's script to anyone she could think of — ABC, Disney, even Oprah.
In the process, she happened upon the Los Angeles-based Make a Film Foundation, which helps hospitalized children with chronic medical conditions produce mini documentaries and selects one future filmmaker each year to create a 20-minute narrative.
At first, executive director Tamika Lamison turned them down. It was a heart-wrenching story, Lamison said, but their mission was to involve children in the movie-making process and they didn't have the resources to tackle a full-length film project.
Goldberg persisted, for the first time sharing her promise to fulfill her daughter's dying wish. Her description of Rina's spirit kept "speaking to us," Lamison said. "Even though she had this debilitating disease, she had hope that her dreams would come true and her life would go on," Lamison said. Many people approach life with a similar mantra, Lamison said, but how many teens suffering from serious illness manage to not only say it, but live it?
"She was loving her life and she believed 100 percent to her dying day," Lamison stopped, caught in flow of tears, "that her film would get made even though she might not be physically here."
A few months later, Lamison and her board agreed to make Rina's movie. Since then, the foundation enlisted Academy Award-winning screenwriter Diablo Cody, of Juno fame, to adapt the script. In Rina's absence, her parents gave final approvals, checking to make sure it maintained the tone and mission she'd intended.
The foundation is now soliciting professional actors, directors and editors to volunteer for the project, reducing production costs to about $40,000. Usually, Lamison said, her agency commits to raising that, but the Goldbergs were so eager to help that they volunteered to organize a local fundraiser. A dessert social and silent auction will be held on March 1, 7 p.m., at Gratz College, with Food Network personality Marc Summers emceeing. (See the "about" page on www.rinasmovie.com.)
If all goes as planned, Lamison said, they'll shoot the film in April. Like their other narratives, it will open in Hollywood before being screened at summer film festivals throughout the country. The Goldbergs plan to host a premiere in Philadelphia and Boston as well.
"I don't use the word exciting," Stacy Goldberg said, because this is Rina's movie "and she's not here. So every step of this process for us is extremely bittersweet and very emotional."
At the same time, Goldberg continued, it's been incredible to see how many people have been stirred to pass along Rina's message, "giving with their whole hearts and no egos, no matter how famous they are."
"To see your only child die is something that no parent should ever, ever have to experience," Stacy Goldberg said. "That is the thing that pushes me so hard because it's my hope that one day, and maybe through this movie, there will be enough awareness of this disease so kids can start winning their battles and parents will no longer lose their children."