Sunday Express

Sunday Express, October 7, 2007

THE UNLIKELY INSPIRATION FOR THE NEW FRAGILE HERO

Photo:David Johnstone

NICOLA BARRY meets the young Scot who lives with a serious genetic condition and inspired an author to create a protagonist like no other. Welcome to the literary world of Henry Irvine...

CHILDREN'S literary heroes come in many guises: there's Alex Rider, the spy hero of Stormbreaker, or Harry Potter, the boy wizard phenomenon created by JK Rowling, to name but two.
   These modern heroes are usually clever, and they don't show too many signs of vulnerability.
   So what surprises you about James Jauncey's latest novel for young adults, The Witness, is that the two main characters are bound together by one's dependence on the other.
   The plot centres around a rebel movement which has taken up arms against an independent Scottish Government, resulting in widespread anarchic violence.
   Finding himself responsible for the only survivor - a young boy with learning disabilities - the main character determines to return the child to what is left of his family, without realising he has close ties to the rebel leader.
   Our hero, John, attempts desperately to keep them both ahead of the government soldiers who are chasing them across the Cairngorms.
   This book's key strength lies in the way we discover, through John's eyes, that the boy, Ninian, has the genetic condition known as Fragile X. And it is because of this condition that the pair break the mould of traditional literary heroes.
   However, the novel is a case of truth being somewhat stranger than fiction, because the inspiration for Ninian was the son of close friends of the author.
   The real star's name is Henry Irvine. He is 15 with a mental age of seven and lives with his elder brother Lewis, and his parents Richard and Pru, near Pathhead, Midlothian.
   Henry, according to his mother, is a complex character. He is illiterate and innumerate, and he hates noise, crowds and social situations. Such behavioural quirks could apply to any one of us, but the scale is sliding. We are, in the main, at one end while Henry is right at the other.
   Fortunately, he lives within a loving, protective family.

HENRY looks perfectly ordinary, although people with Fragile X often display certain physical signs such as large, flapping ears, a long face, and a wide forehead. They are socially extremely anxious and do not make eye contact.
   Pru savs: "As mainstream people we can cope with a change to our routines whereas Henry, and people like him, can't.
   "I knew, within a couple of days of his being born, that Henry wasn't right. He didn't like being breast fed and cried 24/7. He was inconsolable.
   "The nurses kept telling me to just put him down to sleep, making out I was an over-anxious mum. But my son didn't respond to ordinary management."
   One day, as Henry was approaching his second birthday, Pru took him to see a psychiatrist at the Royal Hospital for Sick Children in Edinburgh.
   "When we arrived," Pru recalls, "Henry was vomiting uncontrollably. The doctor was fantastic. She said she wouldn't do anything until she'd carried out some tests."
   Thankfully, Pru found what she was looking for - a diagnosis for her son, Fragile X, the second most common form of inherited handicap after Down's Syndrome.
   There is currently no cure for it, although appropriate education and medication can maximise the potential risk to each child.
   The X means the abnormal gene is located on the X chromo¬some. A constriction can be detected, through a microscope, near the tip which makes it fragile and susceptible to breakage. Both sexes can have the syndrome but boys are worse affected.
   The gene was first identified in 1969 but was not associated with delayed development and behavioural difficulties until 1977.
   "It's very challenging having a serious handicap within a family," Pru said. "There are no pluses or minuses as such. He is just a child within our family. If he is being difficult, it is because he's an adolescent, because he's Henry, not because he has Fragile X.
   "Our job as parents is to prepare our children for the world. It is sobering to have a son with whom this cannot be done; a child who will live with us forever. It's a huge adjustment.
   "We can't ever just go out on a whim - we always need a babysitter. We have to live our lives in a measured way so that Henry is always able to manage."
   And what about when Pru and Richard are no longer able to look after Henry?
   “We will make plans for Henry's future," says Pru. "I hope there will always be a roof over his head and remember, he has a brother who adores him."
   But what does Pru make of The Witness? "I am so close to this book. Jamie and I are old friends," she says. "But I was surprised when he said he wanted to base a character on Henry.
   "Jamie used to phone a lot and ask questions about Henry. there.
   "My son makes for a rich and complex fictional character. The raw material is all there.
   "Also, the character will teach readers about Fragile X which is fantastic.
   "Quite honestly, the real problem for children with Fragile X is other people's attitudes towards him. So anything which teaches people not to be afraid of the condition is to be welcomed."
   As for the author, his intentions were slightly different. James says: "I was curious about how the world must seem to someone who lives constantly in the present, with little idea of what has happened in the past or what's going to happen in the future.
   "The character was a real challenge to write, because, obviously, as a writer, one wants some transformation to occur, while a child with that condition is stuck, in a way. But the reaction I have been getting is that people really love him."

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