Published: 12 January 2012
by RICHARD OSLEY

BORN with a rare, debilitating condition which has only ever been diagnosed in around 600 people in the world, doctors once feared Sam Frears might not live past his fifth birthday.

Now, defying those medical prognoses and approaching his 40th birthday, the son of one of the world’s best-loved film directors is to offer an insight into the almost unique challenges he has faced and the ambitions to become a professional actor he has now set himself for the future.

Sam, whose father Stephen directed My Beautiful Launderette and The Queen, and whose mother Mary-Kay Wilmers edits the London Review of Books, has lived his life with familial dysautonomia.

It has damaged his nervous system, leaving him walking with a stick.

He is partially sighted and the condition makes it so hard to swallow liquids that fluid is administered through a tube.

Sam compares himself to a flower which needs watering each day.

Well known in Primrose Hill’s literary circles where his remarkable determination and stoicism is legend, his life story is told in a new 60-minute film to be broadcast on television next week.

This is the first time he has talked about the unimaginable hurdles he has faced, Sam explains in My Friend Sam, part of the BBC's Storyville documentary series, how he wants to make his parents and friends proud and not just be known for his famous relatives.

He explains: "You don't want sympathy. You just want to feel good in yourself. You want to say yes I can do that not through my parents or things like that. I want to do things for myself."

Big West Ham fan Sam, 39, – a measure of his outlook is that sometimes his frustration at his football team's misfortunes seem bigger in the film than his disabilities – is shown meeting some of the country's best known writers.

He meets friends at drinks parties at the London Review of Books shops in Bloomsbury and is determined to make the most of a "hectic social life". 

"He is consistently pleased to see you," says playwright Alan Bennett, one of his close friends, at one stage.

"He is never full of his own concern that he doesn't have time to talk or joke, an encounter with him invariably cheers you up.

That's not a small virtue."

During the filming My Friend Sam, part of the BBC's Storyville series, Sam says the making of the film has given him more confidence.

It later covers his search for a partner to share his life with.

"It is part of my routine, going to hospitals even if for a couple of hours," says Sam.

"It is something I have to bear with."

His parents talk movingly about frightening episodes in the early years.

Stephen Frears says: "My father, who was a GP, I can remember him saying to me that he didn't think he'd get to 20."

Ms Wilmers, who lives with Sam in Primrose Hill, adds: "When he was five days old, he choked and they rushed him away and it was a very long time coming back and after that I was always very anxious after that he would die."

The film, full of local landmarks from Primrose Hill and Camden Town where Sam is well known, right down to Ossie's Barbers in Parkway, was made as part of a run of films on 'Survivors'.

Several of the family's friends are thought to have long felt that Sam's story should be told because they find him so inspiring.

Sam says in the film: "I want to meet people who you can have a laugh with, someone to share things with."

• My Friend Sam will be broadcast on BBC4 on Monday night (January 16) at 10pm.