Twins stay on top of debilitating illness

Alex and Lizzie McKay cram all they can into their lives despite cystic fibrosis curtailing many activities. Photo / Richard Robinson

When Alex McKay ran 10km this year, his parents and doctors were stunned.

Months earlier, the 17-year-old who has cystic fibrosis could barely get through his school cross-country.

He finished the race breathless, mostly walking, in 45 minutes.

Cystic fibrosis is an inherited disease that causes shortage of breath and recurring chest infections.

But the student's run was a symbol of his determination to live a full life.

This morning, Auckland City Mayor John Banks will present Alex and twin Lizzie with cystic fibrosis achiever awards and a grant of $6000.

The awards recognise the twins' "ability to shine through even in the toughest times".

"It's a challenge and an obstacle," says Alex. "We've lived with it since forever, so we've got used to dealing with it.

"But on a daily basis we have physiotherapy and medication and that is quite time-consuming."

He crams as much as possible into his day, because he does not know when he will have a severe bout of illness, and is aware of his shortened lease on life.

Alex is deputy head boy of Sacred Heart College in Glen Innes, is an academic overachiever and captains the Senior B tennis team.

"I think there is probably an element of striving to achieve because of the disadvantage we've been given, but also because you've got to make the most of every moment ... CF is terminal, so we have to take every chance we get while we still can, especially when we're well."

New Zealanders with cystic fibrosis have a life expectancy of about 30 years. Long stays in hospital are common, and daily life is punctuated by physiotherapy and treatment.

Lizzie's physiotherapy is twice a day, often as long as 40 minutes.

"My lungs are not as good as Alex's," she says. "I'm not as well as he is. [CF] makes the airways smaller, and the lungs, so it's harder to breathe. By doing the treatment, we keep the airways as big as we can."

Alex and Lizzie's parents were both carriers of the CF gene. "I was diagnosed at 2 weeks old," says Lizzie.

She says an unrelenting positivity helps her survive the sicker periods.

"I cope with it better than if you were told when you were 15. It's all I've known. But I wouldn't say it's easy to do all the treatment we're used to.

"I'm used to it, even though I don't like saying I'm used to it."

Although a current bout of illness means she does not play sport - she gets puffed walking up stairs - Lizzie excels in several subjects at Baradene College in Remuera and is an award winner in science, mathematics and problem-solving.

The grant will fuel the twins' next step in their concentrated, often-exhausting lives.

They will both commit the money to tertiary study.

Alex intends to study law and commerce and Lizzie wants to study geography, with an eye to teaching.