Esther-Jordan Muriwai was an advocate for young patients who might be going through what she went through during her battle with bronchiectasis. Photo / NZME
Esther-Jordan Muriwai was an advocate for young patients who might be going through what she went through during her battle with bronchiectasis. Photo / NZME
A new fund for families affected by a deadly lung disease has been launched in honour of a young Whangārei woman who was a courageous patient advocate before she died.
The Esther-Jordan Muriwai Ahuru Fund has been established by the Asthma and Respiratory Foundation NZ, after it formally absorbed theBronchiectasis Foundation.
The fund will help families cover the costs of supporting their children with bronchiectasis – a chronic and potentially fatal lung condition – such as travel to specialist care.
Despite much of her short years spent in hospital, she had a long list of achievements, including graduating with a degree in Māori Studies, competing in Miss Aotearoa and Miss New Zealand beauty pageants, campaigning for youth involvement in local government, writing a book for tamariki in hospital and setting up the Northland Bronchiectasis Support Group.
In 2014, when Esther-Jordan Muriwai was presented with a Bravery Award in the Asthma Foundation Achievers’ Awards by then-Governor-General Sir Jerry Mateparae, she cheekily asked him to be patron of the national foundation she intended to start.
Since then, the foundation helped raise awareness of bronchiectasis, which disproportionately affected Māori, Pasifika and those living in the most deprived areas, according to the Asthma and Respiratory Foundation NZ.
Camron Muriwai said his daughter had courage and directness that even Mateparae could not ignore.
“You see this tiny girl with arms like toothpicks but there is something about her presence, when she starts to articulate, her inner presence comes out.”
Members of the Asthma and Respiratory Foundation NZ and Bronchiectasis Foundation cheer the new fund in honour of Esther-Jordan Muriwai including (from left) Sir John Clarke, John Knight, Camron Muriwai, Ana Sadlier (with photo), Letitia Harding and Professor Cass Byrnes.
The next step for the Bronchiectasis Foundation was about ensuring longevity for Esther-Jordan Muriwai’s vision, including the fund bearing her name in perpetuity, Camron Muriwai said.
“This is something Esther would be proud of: it’s the simplest support to ensure that a family can travel well or have a place to lay their head down when they get there.”
Camron Muriwai said that working with the Asthma and Respiratory Foundation NZ was a natural fit, as it supported his daughter when she was unwell. He would continue to be involved.
“She would be proud. We’re proud and very, very grateful.”
Bronchiectasis remained one of the most serious respiratory conditions affecting children in New Zealand, said Asthma and Respiratory Foundation NZ chief executive Letitia Harding.
Each year, about 70 children were diagnosed with the disease and 140 Kiwis died from it – nearly three each week, she said.
“The Bronchiectasis Foundation played an important role in raising awareness of the disease and supporting the thousands of families who are affected by it.
“We are honoured to carry that work forward and build on the legacy Esther-Jordan and her whānau created.”
Those wanting to donate to the fund can go to asthmafoundation.org.nz and click the “donate” button.
Denise Piper is a news reporter for the Northern Advocate, focusing on health and business. She has more than 20 years in journalism and is passionate about covering stories that make a difference.
