Sunday Express, October 7, 2007
THE UNLIKELY INSPIRATION FOR THE NEW FRAGILE HERO
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
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
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
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
"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
One day, as Henry was approaching his second birthday, Pru took him
to see a psychiatrist at the Royal Hospital for Sick Children in
"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
And what about when Pru and Richard are no longer able to look
“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
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
"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."
© Sunday Express 2007
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