Anna Daniels
Showbiz Cheat Sheet chatted with South African producer and director Odette Schwegler about her documentary Tin Soldiers, which was featured during the 2020 FirstGlance LA Film Festival. The film puts a spotlight on those suffering with Fibrodysplasia Ossificans Progressiva. Here’s a peek into our conversation with Schwegler.
Showbiz Cheat Sheet: How did you decide to do the documentary Tin Soldiers?
Odette Schwegler: The history of it is that I’m an investigative journalist by training and career in South Africa for almost 20 years. I contributed to our equivalent of 60 Minutes. We used to partner with 60 Minutes in the early days of the show. About 10 years ago, we were doing a series of medical stories, some of them in the United States. One of the stories that we did was a focus on FOP.
Through that story, we met some of the most incredible families, one of whom were the Cali family. At the time, Amanda Cali was and is the mother of a person with FOP. He was diagnosed when he was five, but he’s now 15. I happened to be the anchor journalist on that story. The story stayed with me for many years.
About a year and a half ago, Amanda called me up and said some interesting stuff was happening in Brazil. There was a meeting of African and Brazilian families for the first time ever, and wondered if it could be the start of a documentary. As a storyteller and a filmmaker, sometimes a story just comes and grabs you by the heart, and this was one of those stories.
Amanda Cali is not only an inspiration; she is a driving force behind the FOP patient advocacy movement around the world. She’s a co-executive on the film, and she is a leading light and inspiration behind finding undiagnosed patients.
CS: What is Fibrodysplasia Ossificans Progressiva?
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OS: In simple terms, FOP, is a condition in which the body’s muscles, ligaments, and soft tissue progressively turn to bone. So, people form a second skeleton and get eventually stuck and immobilized within their skeleton. In many cases the condition goes undiagnosed or misdiagnosed.
This condition is one of the most intriguing, ultra-rare conditions known to man. It is the only condition, from what I understand, where one organ in your body turns into something else. Our heart cannot become our lungs, our eyes cannot become our ears, but in this condition, your ligaments, your muscles, your tendons, your soft tissue, become bone. So, they transform into a completely different organ. It’s good, healthy bone, it’s just in places it shouldn’t be.
CS: Was there a turning point or an event that prompted you to move forward with the Tin Soldiers documentary?
OS: There were so many turning points. When I first met Amanda Cali, who is an incredible mother and patient advocate, I asked her, ‘How did you explain to your five-year-old that he had this terrible condition?’ And she told me she said to him:
You know how your back is tall and stiff like a tin soldier? It’s just going to get more like that. And how your arms are straight and strong like a tin soldier? It’s just going to get more like that. And how your heart is brave like a tin soldier? Well you are brave, and you’re a warrior, and you will overcome.
And for me as a young mother, I was so struck by that enormity of depth in a mother who is not transferring her own pain. I realized there was more to be told than just the story I was telling at the time.
CS: What is the medical community doing to find a treatment for FOP?
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OS: When I first came across this story a decade ago, they weren’t even close to treatment. Now, we’re on the verge of several treatments with drugs and clinical trials. There are incredible people around the world working on this condition.
The pioneers really came out of Penn Medical School, led by Dr. Fred Kaplan and Eileen Shaw. That lab was where the gene responsible for this whole thing was discovered in 2006. And now there are many pharmaceutical companies working on potential treatment. There has been a lot of progress toward if not a cure then certainly toward a treatment or a cocktail of treatments.
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Written by: Cheat
