Small wins a big deal for Dylan
He walked to the start line knowing he would finish last.
For 9-year-old Dylan Soper, every day of his life has been a struggle.
He was born with a congenital heart disease, tetralogy of Fallot - meaning four parts of his heart were not fully formed.
The condition is found in one of every 2000 babies, according to New Zealand's Heart Care Centre, but in Dylan's case he had complicating factors that made his condition particularly rare.
An artery to his right lung was narrow and did not pump sufficient blood, leaving him with only one fully functioning lung.
Ten days after Dylan was born he had his first heart surgery, at 6 months he had his first heart bypass and by the time he was 3 he had undergone another.
In nine years he has gone under the knife more than a dozen times but little has improved his condition.
Dylan's mother, Sandra, said when she was 20 weeks pregnant she was told "there was a problem".
"The nurse came to me and said based on the amnio[centesis] did I want to terminate?" she said. "It never occurred to me to do anything other than have my baby."
Even when Dylan was born, it was worse than doctors had thought.
"I held him for 30 seconds before he was whisked away because he wasn't turning pink - he was just grey," Sandra said.
Despite the constant adversity, Dylan's determined spirit finds wins in the simplest of accomplishments.
Last week he ran Te Anau Primary School's 2-kilometre cross-country race. He finished last, but was simply delighted he ran it at all.
Sandra said the severity of his condition meant running in the cross-country was an incredible battle.
"Knowing he will always come last is a real struggle for him," she said.
Sandra said Dylan was running the race with a friend but, as his breathing became heavy and his body tired, he started to fall behind.
As a parent, watching your child struggle but always keep fighting is heartbreaking, she said.
Knowing that her son's biggest struggle to finish the race would be the frustration that again he would not be able to beat another classmate, she ran over to him.
"I asked him if he wanted to me to run with him. Usually he would say no, but he just nodded," she said.
"I could see how utterly gutted he was."
The pair ran the hilly Te Anau course together, determined to finish.
"Finally crossing that line was a win," Sandra said.
As only a mum can, Sandra has dubbed her son's wooden spoon victory "the first at the back".
"It just reflects how single-minded he can be when he is determined to achieve a goal," she said.
Dylan's next target is to play the bagpipes - an instrument that requires exceptional lung capacity.
"Of all the instruments he could choose, he chose that one, but we try not to discourage him from anything," Sandra said.
The future for Dylan is an unknown, but will certainly involve more surgeries and more tests.
"Obviously, as you grow, you ask more of your body," Sandra said.
Until then, Dylan and his family are focusing on living day by day, and taking the small wins.
"I am really hopeful though, he has done better than I ever thought he would," Sandra said.
- The Southland Times
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