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Regional | Disease

Whānau raises Cystic Fibrosis awareness at Round the Bays

The Te Whero whānau hit the roads of Auckland's 'Round the Bays' to raise funds for ongoing treatment for whānau member Hayden Simmons who has Cystic Fibrosis. The whānau also want to raise awareness to support Cystic Fibrosis New Zealand (CFNZ) services.

The whānau want people to understand Hayden's condition.

Hayden's sister, Lucinda-Jay Te Whero says, “They know (kids) exactly why we are doing it, and they know how Uncle Hayden ended up with Cystic Fibrosis and they know why he has to breathe with his breathing machines at night".

Hayden adds, "I want to go give them a big hug and a kiss because I appreciate it so much and how my nephews have done it".

At birth, Hayden was diagnosed with Cystic Fibrosis. Despite his condition, the 16year-old still lives life to the fullest.

"I usually do physio twice a day and take medication depending on how sick I am and if I have any infections," he says.

"CF - Cystic Fibrosis is a genetic disorder with the lungs and digestive system".

Hayden's sister Lucinda and her partner, Jordan Tipene, are educating more of their whānau about the disorder.

Tipene says, "My nephew's name is Isaiah Joseph and he is 9-years-old and he could well be a potential carrier Cystic Fibrosis and we are teaching him it's a genetic disorder and you can't catch it through the air or anything it's not contagious".

Many groups joined Round the Bays in support of various topics. But for Hayden who couldn't be there out of fear of falling ill says it was extra special.

He says, “Pretty important I like to think about the fun things happening I my day instead of thinking about treatment”.

The Te Whero whānau managed to fundraise over five hundred dollars.

This year's Cystic Fibrosis Awareness Week runs from 15 August to 21 August .