Kickstarter Launched for Bea The Film, a Documentary About Hugh Rienhoff’s Daughter
By Allison Proffitt
February 11, 2015 | At twelve years old, Beatrice Rienhoff is having a big year. After years of being homeschooled, she transitioned to 5th grade this year. It’s been a smooth adjustment, Bea’s father, Hugh Rienhoff, says. She’s much more physically active now, Rienhoff says, and plays basketball.
Hugh Rienhoff has been talking about his daughter’s DNA for years. In 2007 Beatrice and father were on the cover of Nature. Beatrice has an extremely rare condition—not a disease, Rienhoff emphasizes—that has so far resulted in musculoskeletal anomalies. Her right side is particularly weak, and her muscle tone is very low.
But beyond today, Bea and her family don’t know what the future holds, because until recently she has been the only person known with her particular collection of symptoms.
Now the next steps in Bea’s journey will be the subject of an upcoming documentary. A Kickstarter campaign launched last week is seeking to raise $35,000 by February 28—Rare Disease Day—to begin production on Bea, a documentary film that plans to follow Bea’s progress for three years.
The documentary wasn’t Rienhoff’s idea; he was approached by filmmaker Kori Feener. But Rienhoff isn’t a stranger to film. His childhood best friend, Allen Moore, is a 40-year veteran having worked on several of Ken Burns' films, including The Civil War, Baseball, and The National Parks: America's Best Idea. Moore signed on to work with Feener and Rienhoff signed off on the plan.
The research into Bea’s condition is progressing along, “two broad avenues,” Rienhoff says. There is a mouse model of Bea’s mutation, TGF-beta 3, and researchers are studying the molecular biology of the mouse and watching for changes in phenotype.
Rienhoff is also searching for other patients with Bea’s same condition. A mother and son pair in Europe both have confirmed TGF-beta 3 mutations. The mother is 68, and Rienhoff says her similarity to Bea is very encouraging. “She has few sort of orthopedic and what you might call connective tissue [issues], but basically healthy.” Two other patients have emerged recently whose mutations haven’t been confirmed yet, but who have similar phenotype to Bea.
The film, Rienhoff says, may follow some of the clinical story, but much of it if will focus on Bea herself, how she deals with the challenges of an unknown condition with an unknown prognosis. Even though Hugh has been very public about his search for a diagnosis for Bea, the film will be an intensely more personal look at Bea than anything the Rienhoff family has revealed so far.
“I have to say, I have mixed feelings about it,” Rienhoff says. “I don’t want Bea to be too self-conscious about her condition, because she doesn’t define herself in the slightest by her limitations… But, I don’t want her to become a celebrity, so to speak… I don’t ever really travel with her for any sort of outside exposure.”
Rienhoff sees the film as an opportunity to explore how Bea deals with the challenges of an unknown condition, about how anyone adapts to physical weakness, and about coping with the day-to-day consequences of our genomes.
“To some extent we all carry these genetic limitations. That’s kind of Bea’s point of view. ‘Everybody’s got some stuff, I just happened to have one that bent my fingers and deprived me of a little bit of strength on my right side.”
Bea certainly isn’t a, “victim of her genetics”, Rienhoff stresses. “She thinks that she’s a pretty normal girl. She has a few little issues, but there’s nothing she can’t achieve in her own mind. That said, she’s very practical about what she takes on and what she doesn’t take on.”
If nothing else, Rienhoff hopes that the film will show what he sees in his daughter: “the triumph of her perseverance and personality over the limitations that have been set by this genotype.”