Cystic fibrosis girl on awareness walk

The Fisher family from left Andrew, Amber, Isaac and Claire get ready for their 5km walk at next weekend's Napier Pak'nSave half-marathon. Photo / Supplied

Walking 5km is a long way for a 9-year-old - let alone one with cystic fibrosis.

But Amber Fisher is determined to cross the finishing line.

She is taking part in the Tremains 5km run/walk at next weekend's Napier City Pak'nSave Half Marathon.

The Fisher family are lacing up their trainers to raise money and awareness for Cystic Fibrosis.

Claire and Andrew Fisher were devastated after Amber was diagnosed with cystic fibrosis when she was 6 weeks old.

The couple hardly knew anything about the condition.

Now, hospital appointments, daily medication and treatment to keep her lungs functioning well is part of their life.

Amber is "lucky" in that she stays relatively healthy and hasn't had to be hospitalised since she was a toddler. But it takes a lot of hard work to keep her that way, Mrs Fisher said.

Amber's lungs, stomach lining and pancreas get clogged up with sticky mucus.

Twice a day she pops a peg on her nose and breathes salty air through a nebuliser into her mouth. Mrs Fisher admits it could be "gruelling" for her daughter when she was tired but she took it all in her stride in trying to keep healthy.

Exercise is even more important for people with CF, Mrs Fisher said. But they must remember to keep up their salt and water intake as unlike others, their body can push salt out, but not pull it back in.

So the 5km walk won't be an easy feat for Amber, "It's a big deal, she's not a sporty kid". However Mrs Fisher said her daughter was really looking forward to the event and had fun exercising with a personal trainer during the school holidays.

"She gave it everything."

Mrs Fisher was keen to raise the awareness of Cystic Fibrosis.

Even amongst family there was a lot of misunderstanding and people did not seem to realise that due to genetics there was a relatively high risk of them having a loved one born with this chronic illness.

"They see that Amber is doing really well and she is, but they don't realise that a lot of work goes into that. And not everyone with Cystic Fibrosis keeps as well as Amber," she said.

"For most people with Cystic Fibrosis, and their family, there is the concern of what is around the corner - the worry of what bug they will catch next and how permanent the damage will be."

Cystic Fibrosis was now preventable.

"IVF with genetic testing is available and can be government funded for couples that both carry a CF gene. Just like Amber, our son, Isaac, is 50 per cent me and 50 per cent Andrew but he does not have Cystic Fibrosis, he isn't even a carrier. We let the fertility experts and scientists do the work and we are very grateful."

In the last 30 years advances in medical care has seen the age span for a person with CF go from 10 to 35 years.

Funds raised by the Napier City Pak'nSave Half Marathon will go to the local Cystic Fibrosis Association. Mrs Fisher said the association was "vital" in providing them with a high-functioning service organisation and a support group.

"Every day my family's life is affected by CF, with Amber doing treatments and taking medication just so she can live a normal life. We don't know what is around the corner but with funds raised by events such as the Napier City Pak'nSave Half Marathon, we can be hopeful," she said.

"We are looking forward to taking both kids out on the Tremains 5km run/walk on 18 October and we would love to see other families doing the same."

-For more information visit www.runwalkhb.org.nz