Special day realises disease victim's vision

Esther-Jordan Muriwai.

The first Bronchiectasis Day to be held anywhere in the world will be staged in Whangarei this week, organised by the foundation put in motion by Esther-Jordan Muriwai before she died of the effects of the childhood respiratory disease.

The April 7 event will be held a year after the Bronchiectasis Foundation was launched on what would then have been Ms Muriwai's 25th birthday.

One of the main messages concerning bronchiectasis is that parents do not ignore a "wet cough", Ms Muriwai's father Camron Muriwai said.

"A wet cough is not normal. We may have got used to the sound of it, but it is not good and must not be ignored."

He said it was vital "to close the gap between the symptoms, diagnosis and management of conditions leading to bronchiectasis as nine times out of 10 it is too wide".

The Whangarei event will be held in the Whangarei Hospital cafe from 10.30am to 2pm. It will include the result of tendered bids for a tewhatawhata (stick) and patu (club) carved by kaumatua Ned Peita, spot prizes and entertainment from the kapa haka group of Maori language immersion school Te Whare Kura o te Rawhitiora, where Ms Muriwai was a foundation pupil.

Prizes will be offered for the winner of a short quiz on bronchiectasis and a raffle will be drawn for a patchwork quilt made by Christine Cook.

Mr Muriwai said the two carved taonga had been auctioned together as "they were made together and they will stay together".

The baby quilt donation was made after he stopped to admire a quilt being sewn by a visitor to the hospital, where he works. Unaware she was talking with Ms Muriwai's father, Ms Cook told him she had read the story of a young Northland woman who died of bronchiectasis but had led an inspirational life.

"She told me, 'When I've finished this piece I'm going to donate it to the foundation she started'," Mr Muriwai said. He said he was very proud to tell her that had been his daughter.

Ms Muriwai, who set up the Northland Bronchiectasis Support Group in 2013, was passionate about starting a national foundation to support families and back more research.

While her illness affected her severely, it did not define her - and during her too few adult years she was a beauty queen, budding local politician, campaigner and advocate.

In one interview with the Advocate, she said: "You have to take what your challenge is and use the wisdom gained from it to get on with life."

After being presented with a Bravery Award in the Asthma Foundation Achievers' Awards in Wellington by Governor-General Sir Jerry Mateparae in March 2014, she cheekily asked him to be patron of the Bronchiectasis Foundation she would one day set up.

Ms Muriwai died only months later and her parents Ana Sadlier and Mr Muriwai, with other supporters, completed the task she had begun.

True to his word, Sir Jerry became patron and officially launched the foundation in Whangarei on April 7, 2015.