As Jamie Gargan poses for photographs against a yew tree in the grounds of her east Belfast school, the immediate impression is of a pretty young girl wearing fashionable hoop earrings and hairband.
Her infectious smile lights up her face and it comes as something of a shock to finally register that both her arms end just after the elbow.
In fact, Jamie had to have all four limbs amputated after contracting bacterial meningitis, the most serious form of the disease, when she was nine months old.
But before the pity becomes overwhelming, it’s worth remembering that this young woman, the only Northern Ireland winner in the Child of Courage 2009 awards organised by the Share A Dream Foundation, does not regard herself as disabled.
Although Jamie wrinkles her nose when asked how she feels about the D-word itself, she finally says: “Sometimes I think the word is unfair. You’re still the same as other people, just different on the outside.”
Then she adds thoughtfully: “I don’t feel disabled.”
Nor does the Mitchell House pupil act disabled.
Watching her open her current favourite reading matter is positively humbling.
She gets to the page she wants as quickly as you or me by elbowing her way in and using what remains of her arms as hands.
The way she manoeuvres the computer keyboard to write ‘My name is Jamie Gargan and I’m a 14-year-old girl’ would put some journalists to shame.
Kelly, Jamie’s classroom assistant who is acting as minder, chips in to underline the teenager’s complete absence of self-pity.
“We were looking at a question in personal development today,” she says
“It was ‘If you could take something from somebody you admire, what would it be?’”
Apparently, Jamie immediately said Beyonce’s hair, rather than her dancing skill or ability to stretch out those long arms.
In many ways, Jamie is a typical teenager. She has blonde highlights and spends quite a while brushing her hair before the photo session.
Like the rest of us, she is enjoying the current series of X Factor (“I really liked Jedward but I think Joe is going to win”).
And, of course, she spent considerable time pulling together the outfit for the awards ceremony, which took place at the Limerick Radisson hotel last weekend.
“I had my eye on a short, black dress with sequins but it sold out so I went to Debenhams with my mum and sister Stacey and we got a red silk dress,” she explains, her face lighting up with enthusiasm as she recalls the shopping trip.
Jamie completed the look with a tiara “with small diamonds” from her grandmother, Georgina. This is clearly a fashion-conscious 14-year-old, whom her mother laughingly calls an “attention-seeker”.
Yet she also has to contend with the fact that she needs mother Marie’s help when washing in an adapted shower at the family home in Belfast. And will eventually need replacement hips because of wearing artificial limbs.
One of the reasons Mitchell House vice-principal Valerie Meadows nominated Jamie for the award was because of her sheer normality in the face of difficult circumstances: “She is truly inspiring and will try anything. Jamie always volunteers.”
Mrs Meadows reveals that this enthusiastic student is able to complete tasks even her mother doesn’t know about, describing Marie Gargan’s reservations when some Mitchell House students, including Jamie, went off to Edinburgh this summer.
Valerie explains: “I told Jamie’s mother that the student accommodation where we’d be staying was fully-equipped with kitchen facilities and electric kettles. She became anxious and said ‘Don’t let her near those, it could be dangerous’. I said: ‘But she uses one already and makes tea for everyone at school’.”
The school trip was fun: Jamie thoroughly enjoyed doing the tourist round as well as enjoying a meal at the legendary Chinese restaurant, Jimmy Chungs. “I had curried chips.” she divulges. Another plus was the fact that a cute young football team was in another part of the student block.
According to Valerie Meadows, Jamie was understandably thrilled by the fact the young fellows had walked down past their floor one evening. “I heard her squeak and she was so excited she did tumbles right down the corridor.”
Jamie giggles at the memory. But if you ask her what she remembers about her life-changing illness, she shakes her head because she was too young to have any memories of that time. Her mum Marie (35), however, remembers the day and date that her baby girl’s apparent flu turned into something life-threatening.
“It was Wednesday, January 16, 1996 and I was living at my mother’s. Jamie had what I thought was a flu, but then she got so hot her tears were drying on her cheeks. Her body was floppy too. Although I’d never even heard of meningitis, I knew we had to get her to hospital fast. So we rushed to the A&E at the Royal Victoria Hospital in Belfast and when the doctors saw her, they took her straight into resuscitation, then intensive care. They said I might have to say goodbye to Jamie.”
The little girl had developed bacterial meningitis, the worst of all the variants of this disease. She also had septicemia. Not only had her brain lining and spinal cord become inflamed, her circulation wasn’t working and as blood was leaking into organs it shouldn’t, her extremities were being deprived of the crucial liquid.
What happened next was the stuff of nightmares and horror films. Marie recalls: “She was a small baby but when I went in after they’d been working on her for three hours, she’d completely changed. She had swelled up like a balloon and looked like a three-year-old. She was purple in colour and I couldn’t touch her in case I punctured her skin.” The situation got worse — meningitis is one of the fastest spreading bugs around and people can die within four hours of being infected.
Marie recalls: “That night she was put in a room off the ward. They said the only thing keeping her alive was her heartbeat, which was very rapid. Her liver and kidneys were packing up, she was on dialysis and they were just waiting for her to have a heart attack.”
After the swelling had gone down, thanks to heavy duty antibiotics, Jamie faced challenges beyond simple survival. “She started to blister all over with big bubbles which burst and left black pustules. The doctors had to take her to theatre and scrape it all off. They knew by then which tissue was alive and which wasn’t. I remember her little hands and feet were as black as a rotten banana skin. There was a risk her fingers could simply have dropped off.”
Marie and her family never left the hospital during this time and a strong maternal instinct led her to confront the terrible news of the next operation with courage.
“You just thought about the baby. In a way it was positive. I didn’t care they were amputating, I just wanted to keep her. I honestly felt they could have given me her head alive, and that would have been ok.”
The operation was meant to last 12 hours: Jamie went into theatre at 10am and came out early at 3.15pm. “The surgeon, Mr Brennan, was brilliant and they did it all in one,” says her mum.
What encouraged Marie was that 10 minutes after returning to an ordinary ward, Jamie demanded a yogurt.
“She was just back on the ward, and I thought, ‘Why not?’ and fed her a strawberry yogurt.”
The little girl’s bandaged limbs didn’t seem to bother her.
“As a child, she never worried about things, although as she gets older it’s harder.”
Jamie spent over three months in hospital but after the infected tissue had been removed, rapidly got better. Her first birthday was on April 8 and the family worried that Jamie would not be home in time. Happily, she was. As her mother says: “We made it a really big birthday, and went to Beechmount Leisure Centre with family and friends. It was great.”
Now Jamie leads more or less the kind of life she would be leading if she hadn’t been struck with the meningococcal infection. This Halloween she went trick and treating with her cousins dressed as a ladybird. “We didn’t get much money, but we got loads of sweets,” she says, with a grin.
Jamie was thrilled to spend last weekend in luxury at a Limerick hotel for the Children of Courage awards. She enjoyed meeting the other winners as well as Share A Dream founder, Shay Kinsella. “It was great and I felt terrific. I’d also like to thank Mr Kinsella.”
Marie adds: “It was wonderful but meeting the other winners was tough. You think you have things bad ...”
At school, Jamie is a drama star and will play Britney Spears — “a real bitch” according to the drama teacher — in one of the Christmas plays. She isn’t attempting an American accent but is apparently giving a great performance.
In a world of conformity, where beauty is defined as Cheryl Cole, it isn’t easy to live with difference. Although Jamie is happy with her life, like any other teenager she sometimes feels self-conscious. Her mother recounts an anecdote about going with her daughter to a doctor’s appointment recently. “Because there were several people in the waiting room, Jamie didn’t want to sit with them. I said: ‘Don’t worry about it’, but she felt unhappy. She tried to stuff her arms into her pockets but they wouldn’t reach.”
When Jamie was told by her mother that she’d won the award and prize — a surprise trip, the ball and a meeting with Irish President Mary McAleese — she said in the universal adolescent argot: “Oh my God ...!”
But she shouldn’t have been surprised. If courage is grace under pressure, Jamie Gargan exhibits it every single day.
The Share A Dream Foundation helps children who have suffered from life-threatening illnesses. For further info, tel: 00353 61 633777 or visit www.shareadream.ie