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KAVIR FILMS LTD

Exploring ‘Duchenne Boys’: An Article by Jane Millichip, CEO of BAFTA, on Sohrab Kavir’s Documentary

Grief. Dissociation. Rejection. Fake passport. Smuggler. Flight from Iran. Afghanistan, Pakistan, Nepal, UK. Asylum. Education. Research. Fund-raising. Return to Iran. Creative block. More grief. Despair. Addiction. The 12-Step Programme. Recovery. Film. Seven awards, and counting…

This is the agonising trajectory of filmmaker Sohrab Kavir in his 20-year bid to produce his self-funded, award-winning feature documentary, The Duchenne Boys; a personal narrative of survivor’s guilt and the search for meaning, after the deaths of three of his brothers in Iran, from Duchenne Muscular Dystrophy.

It is also the triumphant trajectory of man who refused to give up, and for whom the act of making this film was both a catharsis and a campaign for change. 

If you have heard of Duchenne Muscular Dystrophy, it probably means you are personally affected by it. A little known, severe, progressive, muscle-wasting disease, Duchenne leads to difficulties with movement and, eventually, to the need for assisted ventilation and premature death. It is most common in boys, and it can take hold from the age of three. And if you live in Iran, it is also hugely misunderstood, leaving sufferers and their carers without the medical and social assistance needed to ease the ravaging effects this disease inflicts on its young hosts.

This was Sohrab’s boyhood in Iran, in a family of modest means, watching helplessly as his brothers succumbed to Duchenne. So little was known about it, that for years Sohrab’s parents thought their sons suffered from polio.

“When my little brother died, I was about 19. I was in shock. I hated myself. I hated the world. I was lost. I didn’t know it at the time, but I was looking for meaning,” says Sohrab.

“I started watching films, and I came across the James Dean movie East of Eden. In that moment, I knew I wanted to be a filmmaker. And in that moment, I decided I needed to make a film about my brother. I didn’t want my brother to have died in vain. In a way, I became a filmmaker to make this film.”

To say Sohrab is determined is somewhat of an understatement, as the prologue to this article testifies. In 2003, he used a smuggler to help him escape Iran, and took his chances with UK immigration. He learned English and studied film production at London South Bank University. He now has UK citizenship and runs a production and marketing business, living in Stroud with his wife and baby daughter. He attributes much of his determination to the strategies he acquired to cope with ADHD and dyslexia, conditions that he says were also overlooked in his homeland.

Early in the film’s development, in the mid noughties, Sohrab struck upon a brilliant filmic conceit. He would form a national virtual football team of Duchenne sufferers, with bespoke avatars, to play an online football match against a similar team from the UK.

“You have to understand that football is really important to Iranian kids. But with Duchenne, the legs go first. And if they can’t use their legs, they use their imaginations,” say Sohrab. Most sufferers retain the use of the hands for longer, and so many create table football games. He continues: “My brother and I used marbles. Another of the kids in the film made a game from ice cream sticks.”

Sohrab wanted to get as many Duchenne sufferers as possible connected to computers, and to the Internet, to improve their quality of life. His virtual football team was the perfect vehicle, both for his campaign and his film.

“The idea that these boys would be playing football via a computer using their personalised avatars was massive for me,” he says.

In 2010 Sohrab paid fines of around £5000 to the Iranian government for his evasion of National Service seven years earlier, and he returned to Iran to make his film. He met hundreds of families in his quest to form the football team. Without a database for Duchenne sufferers this was painstaking work that relied on word-of-mouth testimony and extensive travel. The boys’ stories are illuminating. Several of their fathers are wracked with guilt in the belief that they must have offended God to cause him to strike down their sons. One, a former mullah, became a drug addict, so great is his despair. Many of the boys have become accomplished chess players, one of the few outlets for their broken bodies and smart minds. Few complain.

Sohrab returned to the UK with 130 hours of footage to start the edit. Unsurprisingly, he hit a creative block, but managed to cut a short version of the film and submitted it to London Film School earning him a bursary to start a Masters degree in film.

But like all compelling three act narratives, Sohrab’s life story has its own second act nadir. As does his film.

During his studies, Sohrab received news that one of his Duchenne team players had died. “I became numb. I couldn’t finish my work. I was lost. I wanted to stay numb” he says, referring to his descent into addiction. More of his boys died, as did Sohrab’s hope. Eventually, he sought help via the 12 Step Programme.

“This film would not have happened without the 12 Step Programme. It taught me humility, and I understood that if I was going to complete the film, I had to share all my story.”

Sohrab finished his Masters and approached the acclaimed Iranian film editor Hayedeh Safiyari. “I was amazed, when she agreed to edit the film,” exclaims Sohrab.

By now, Sohrab’s entire teenage football team had died. Just like Sohrab himself, his film could so easily have succumbed to this unbearable tragedy. It took Hayedeh and Sohrab almost a year to re-cut the film, in between other projects, Sohrab raising funds where he could.

It’s hard to imagine how a storyteller can restore hope after this unspeakably sad turn of events, but strangely Sohrab does. His admission in the film of his own downfall and recovery infuses his story with enormous humanity, notably when he returns to the father with addiction, more empathetic than his previous visit.

Sohrab and his film have been intertwined for more than 20 years. Whilst the film is complete, and has won seven international film awards, he is still looking for a distributor. In the meantime, he has launched Duchenne Boys as an online social campaign to raise awareness. His sister now runs a Duchenne charity in Iran. And Sohrab has teamed up with filmmaker Robyn Pete. Together they are working a new film. “We are looking for a cure,” says Sohrab, with customary resilience.

Duchenne Boys is a triumph of resilience. It is, at times, difficult to watch. As it should be. Eleven boys died in its making. We owe it to them to give this honest and raw film the attention it truly deserves.