Imagine living in a world where you are limited to what you can do and where you can go because of a condition that locks your body joints in place; imagine living in a world with such a condition and not being properly diagnosed because doctors, or government departments, did not recognise or know what was wrong with you. This is the story of 53-year-old Thozamile Mciki, whose parents died not knowing what their son’s real diagnosis was: fibrodysplasia ossificans progressiva (FOP).

FOP is a rare genetic condition that slowly turns muscle ligaments and tissue into bone, constraining the person’s movement and his/her mobility, turning them into a “tin soldier”.

It is estimated that there should be about 5,000 cases of FOP worldwide and about 800 to 900 in South Africa. Yet, only some 17 cases have been recorded in South Africa, Mciki being one of them.

Thozamile Mciki, an ‘FOP Warrior’ at the premiere of Tin Soldiers at the 2019 Jozi Film Festival in Johannesburg. Photo supplied.

Producer and director Odette Schwegler started filming Tin Soldiers in August 2018, closing the shoot nine months later. Fast-forward to October 2019, and the film is screened at the 2019 Jozi Film Festival and will soon be shown at the Hollywood Independent Filmmaker Awards Festival in November 2019.

TIN SOLDIERS TRAILER from bl!nk pictures on Vimeo.

Back in 2010, Schwegler was filming a series of documentaries on rare diseases for investigative journalism programme Carte Blanche. It was then that she first heard about FOP. She met Amanda Cali, the mother of Ian, 29, who had been diagnosed with FOP 24 years before; a year ago, Cali contacted Schwegler and told her about a meeting that was taking place in Brazil for patients with FOP and their families, patients from Africa and South America. It was the first time a meeting like this was being held.

“She called me and said, ‘maybe we should film something’ and, ‘let’s ring-fence some money to do that’, and then we did,” Schwegler recalls. “And step by step, faith movement by faith movement we made it happen.”

“Meeting these wonderful people who have this rare condition and their families,” Schwegler says, “they taught me about perseverance and courage.”

Patients living with FOP are often misdiagnosed: some doctors confuse FOP with cancer, sometimes prompting a biopsy, which, in the case of FOP, can harm the patient.

“FOP is actually easy to diagnose. You only have to see one or two patients to be able to diagnose somebody,” says Dr Christiaan Scott, an associate professor at UCT and head of paediatrics rheumatology at Red Cross Children’s Hospital, who also features in the film and has been working with FOP patients for 10 years. “And the potential for doctors to harm [if they don’t know it’s FOP] is very large.”

Currently, there is no known cure for FOP and treatment is limited, but four clinical trials are underway.

Tin Soldiers is more than just a full-length feature film, it is an appeal from doctors featured in the film to call on patients who are suffering from FOP to come forward.

“I am in a very privileged position to be a storyteller and have told hundreds of stories over the past two decades,” Schwegler says about her hour-and-a-half documentary.

“But every now and then a story comes along and grabs you by the heart and this was one of those stories.”

Scott says the documentary is important as it brings awareness to a serious problem.

“Caring for [FOP] patients is such a challenge because the patients face such tremendous challenges,” he adds.

“So, working on a film like this brings up a very human story and unique story of families who suffered and others who dedicated their lives to helping a number of people.”

The film focuses on the challenges and struggles of families from South Africa, the United Kingdom, North America and South America, focusing on how the “second skeleton” – the growth of extra bone on the body – locks the body’s joints in place, ultimately preventing the movement of the child or the person affected by the condition.

In the film, one child affected by FOP says, “They can play with kites… I can’t. They can run fast, I can’t.”

However, the film does more than just inform or raise awareness of the issue: it inspires anyone who watches it to live their life to the fullest, regardless of their physical limits.

“You tell her don’t jump too much,” one of the mothers of a child with FOP explains. “Don’t run too much, but she couldn’t care less. She will do whatever she wants to do.”

The film is currently being screened only at festivals, as the team is still trying to get broadcasting rights. Hopefully, it will soon be released to the public, shining a necessary light on a rare condition. ML