Sam Frears is 40. He has an extremely rare condition called familial dysautonomia, or Riley-Day syndrome; the life expectancy for most babies born with this is five years.
Mary Mount has made her account of what it is like to be Sam a short impressionistic chronicle, interspersed with comments from his mother, Mary-Kay Wilmers. The result is both illuminating and empathetic, with a picture emerging of someone who has refused to be defeated by his condition. Sam has limited vision now and is physically hampered, but he acts, he enjoys the climbing wall at a leisure centre and he is the charismatic centre of a circle of friends.
I did not see the Storyville documentary, My Friend Sam, made by Toby Reisz and shown on BBC 4 earlier this year. I wish I had; but Mount’s work is nicely complementary.
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