Climb Mount Everest challenge for cystic fibrosis sufferers

The mother of a cystic fibrosis sufferer is "blown away" that the Waihi Beach community has launched a Climb Mount Everest fundraiser to support the cause to find a cure.

Kas Craw said in November she and her family moved from Bellevue to Waihi Beach and daughters Frankie-Lee, 4, and Rio, 2, began attending Beach Kids early learning centre.

"We moved to Waihi Beach after spending a year-and-half travelling to every corner of New Zealand while living in a caravan to spend quality time with our kids," she said.

"My husband Nic and I were looking for a forever home and found paradise in Waihi Beach but for Frankie-Lee attending pre-school for the first time posed some challenges."

Craw said Frank-Lee was diagnosed with cystic fibrosis (CF) at 5 weeks old after tests, which came as a "huge shock" as there was no family history of the disease.

The life-threatening diagnosis came completely "out of the blue", she said.

CF is a life-threatening genetic disorder which affects a number of organs in the body, especially the lungs and pancreas by clogging them with thick, sticky mucus.

Craw said a hospital nurse explained to the Beach Kids staff and the other families at the pre-school about Frankie-Lee's condition and what was needed to keep her healthy.

The staff and other families who had been "amazingly supportive" have launched the Mt Everest Challenge to help raise money for the Bay of Plenty branch of Cystic Fibrosis NZ.

Those taking part in the challenge will walk the Waihi Beach Trig 48 times between February 20 to April 21, she said.

The Waihi Beach Trig trail is 3km return - about a 90-minute walk with a spectacular view of Waihi Beach, up the Coromandel coast and east across the Bay of Plenty from the top.

Craw said ironically, for those living with CF it was a bit like trying to climb Mt Everest.

Sufferers have to inhale nebulisers salt air twice a day, as well as take other treatments and have regular physiotherapy to keep healthy.

"Every day is a battle and every birthday is a major celebration for all of us," she said.

Frankie-Lee has been an absolute rock star. She never complains no matter how sick she gets or how many times she has to visit the hospital," Craw said.

"We would love to see as many people as we can get walking the trig and achieving this Mount Everest Challenge," she said.

Beach Kids teacher Emma Over de vest said Frankie-Lee was the most" amazing little girl".

The idea for the fundraiser which began on paper soon grew legs and the whole local community, including several businesses, had come on board, she said.

At the end of the 60-day challenge, there will be a celebration at Waihi Beach Hotel on
April 21 from 10am to 1pm to thank those who took part and donated.

To support the fundraiser go to https://www.facebook.com/events/403082723439142/
Or visit https://givealittle.co.nz/cause/breath-for-cf

Cystic fibrosis (CF) is:

The most common life-threatening inherited genetic disorder affecting New Zealand children. CF affects a number of organs in the body clogging them with thick, sticky mucus. In the lungs, this can cause shortness of breath, a chronic cough and repeated chest infections. At present, there is no cure.