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AGAINST THE ODDS: Sam Frears, aged 40, reflects on being told he wouldn't live to see his fifth birthday

Sam Frears enjoying his latest hobby – rock climbing inset as a young boy

Sam Frears enjoying his latest hobby – rock climbing inset as a young boy

Published: 5 July, 2012

The new film from Stephen Frears is called Lay The Favourite, a gambling reference to the strategy of betting against what at first glance seems the most obvious outcome.

When it comes to his own family, the odds have been wonderfully upset.

Forty years ago, Frears, whose portfolio includes My Beautiful Laundrette, Dangerous Liaisons and The Queen, and his then partner Mary-Kay Wilmers, equally respected in her field as the editor of the London Review of Books, were being told the unfavourable chances of their desperately-ill newborn son, Sam, making his fifth birthday.

Yet with the milestone of his 40th birthday ticked off earlier this year, Sam, from the comfort of the Russian tearooms in Regent’s Park Road, was this week able to explain his life with familial dysautonomia (FD), a debilitating condition which it is thought only around 600 people in the world have been diagnosed with.

It attacks Sam’s immune system, you might have seen him near his home in Primrose Hill walking with a stick. He takes fluid each day from a tube.

Yet, despite his eyesight fading and saliva dripping from his mouth beyond his control, Sam’s positivity as he talks about his day-to-day life and a new ebook by Mary Mount which covers it in even more detail, is infectious.

The text becomes a story of triumph over misfortune, and includes commentary from his mother, who recalls the days when her family became acquainted with the cruelty of FD, a frightening period when baby Sam’s temperature would rocket and he would continuously throw up bile.

Sam is stoic: “I can’t really complain. I just think, thank God. There are a lot more people in worse positions. I consider myself fortunate.”

The life expectancy of five is often attached to babies born with FD, also known as Riley-Day syndrome and curiously only affecting Jews with Ashkenazi heritage.

Research into how best to treat the condition is ongoing in New York, but few have heard of it beyond the families of sufferers.

Mount’s ebook Being Sam Frears follows the film My Friend Sam broadcast on BBC4 earlier this year. These are the first times Sam has talked about the condition.

Stephen Frears admits in the documentary he was at a loss as to handle the situation and Mary-Kay took a more dominant role. In her comment­ary to the book, she says: “He [Sam] and his brother would come running down the corridor of the Times Literary Supplement, where I later worked. They would come running by – very sweet and very funny. And then later that same afternoon I could be called home and be sitting in a taxi, thinking: ‘Oh my God, Sam’s going to die.’ And yet it had only been an hour beforehand that everything seemed absolutely fine. It was always like that.”

Sam admits there are times when he does feel depressed: “There are days in the daytime where I feel nice, all right, but sometimes in the evening when I start to get tired and my eyes are blurry, that’s when I get depressed and upset. That’s when I don’t want my mum to see me like that, to be honest.”

But he has learned to “take each day as it comes” and is raving currently about his new hobby of rock climbing, which sees him ascending the wall at Swiss Cottage Leisure Centre.

“Medical science is so much better now,” he says. “I might have just been born at the right time. I’ve been fortunate with my life.”

Sometimes he seems more worried about the fortunes of his beloved West Ham.

But there are at least two things that pierce his upbeat personality, away from the Hammers’ bumbling attempts to be better.

First, his career as an actor has been hampered, he believes, partly by the film and theatre world’s lack of interest in disabled actors.

“Take My Left Foot,” he explains. “Daniel Day Lewis is a fantastic actor, don’t get me wrong. But I think there are a few disabled actors who could have played that role. If actors can speak the words, act the words, act well, then they should be given the opportunities.”

He acts at the Chicken Shed theatre, which tutors and helps able-bodied actors working alongside disabled actors.
“There should be more integration, just like the real world,” he says. “There should be more disabled people on television. Maybe they are worried about health and safety, but the opportunities should be there.”

The second frustration is along the same lines of integration, but even more personal.

Searching for a soulmate, he hates the prejudice that he finds in the dating game, the idea that disabled people are only a match for each other. In My Friend Sam, he was brave to admit that he visited what is politely described as a massage parlour in Camden Town. He’s also on screen joining an internet dating site.

“I’ve got nothing to hide,” he explains. “Yes, I’m very keen on meeting somebody. I don’t know about babies and starting families but I see how happy my brother is with his family and you do wish that you could have some of that because it does look nice.”

He adds: “There is so much prejudice around but everybody is human and has got something to give. It’s like saying somebody from a different country can’t go out with another different country, like a New Zealander can’t go out with somebody from Australia.”

His ideal woman is actually Australian. Kylie Minogue-a-likes are welcome to get in touch.

• Being Sam Frears: A Life Less Ordinary (Penguin Special). By Mary Mount. ebook £1.99


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