Camron Muriwai to Join the Indigenous Child Health Conference in Canada In memory of “The Inspirer of Bronchiectasis Foundation NZ” - Esther-Jordan Muriwai
Camron Muriwai, senior Takawaenga Māori Health Liaison Officer at Health New Zealand | Te Whatu Ora Te Tai Tokerau, has been offered a trip to Canada to attend the eleventh International Indigenous Child Health Conference alongside Paediatric Respiratory Specialist Catherine (Cass) Byrnes and Adrian Trenholme, Honorary Senior Lecturer Paediatrics, Child and Youth Health, The University of Auckland.
Held in Winnipeg, Camron is supporting Cass and Adrian who are presenting their research, and the prevention programme Lungs4Life to the First Nations people.
In 1993, Camron Muriwai's daughter Esther-Jordan (age 3) came into contact with whooping cough. Esther was treated for over 11 weeks, and then her first of many chest infections began, which took the whānau on a journey of GP and specialist appointments that continued for the next six years.
After a repeat of tests and assessments, a diagnosis came back. Unfortunately, because of the time lapse of six years her lungs had been battered with so many chest infections that the damage was not reversable.
The condition Esther-Jordan had was Bronchiectasis (scarring of the lung).
"As her parents, we really did not understand fully what this meant for her or us accept that her condition could only be symptom managed - we had no real idea that she was, in reality, dying slowly," Camron recalls.
In the consequent years, Esther-Jordan began her journey of advocating for her condition, achieving a lot and touching many lives along the way. Her work led to the establishment of Te Tuapapa mate Rukaukahu o Aotearoa (Bronchiectasis Foundation NZ), a not-for-profit organisation dedicated to supporting those who live with Bronchiectasis, supporting those who care for people with Bronchiectasis and raising awareness of and conducting research into the rare disease. Camron sits as the Inaugural Chairperson.
Esther-Jordan was recognised for not letting her illness hold her back. Governor-General Sir Jerry Mateparae presented her with a Bravery Award at the 2014 Asthma Foundation Achievers' Awards in Wellington.
"She was an integral part of this movement, and as her family and community and in my role as Takawaenga, I continue to support the Northern region respiratory group as a lived parent voice, advocate, storyteller and ambassador in research and resource development."
Esther-Jordan passed away on 5 June 2014 at the age of 24 years.
The conference, which is run by the American and Canadian Paediatric Societies on Indigenous Child Health, will be held from 26 March to 3 April 2025.
Camron will represent those with lived experience, the Bronchiectasis Foundation, and his contribution towards setting up the Lungs4Life programme—a programme to reduce inequity in respiratory health outcomes for tamariki across the northern region.
The first project aimed to identify and intervene early in the cases of tamariki / children at higher risk of developing respiratory diseases, particularly Bronchiectasis.
Paediatric Respiratory Clinical Nurse Specialist Anna Thomas says she has worked with Camron for four years, and he continuously provides a voice for tamariki living with Bronchiectasis and their whānau.
"His gentle nature assists in strengthening relationships between whānau and health professionals," Anna says.
Cameron is delighted and, on behalf of his daughter, very proud to support this kaupapa, which is their life's work in memory of Esther-Jordan, 'The Inspirer of Bronchiectasis Foundation NZ'.
For more information about Te Tuapapa mate Rukaukahu o Aotearoa (Bronchiectasis Foundation NZ) go to this website - Bronchiectasis Foundation - Bronchiectasis Foundation(external link)
If you would like to support Te Tuapapa mate Rukaukahu o Aotearoa go to Health Fund PLUS - https://northlandcommunityfoundation.org.nz/lungs4life/(external link)
For more information about the 11th International Meeting on Indigenous Child Health go to this website
Photo caption: Esther-Jordan Muriwai with her parents Ana Sadlier and Camron Muriwai after she was presented with a Bravery Award in the Asthma Foundation Achievers' Awards by the Governor-General Sir Jerry Mateparae in March 2014.
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