Source: Asthma and Respiratory Foundation
A new fund named in honour of a young Northland woman who died from a devastating lung disease at 24 will help support families affected by bronchiectasis.
The Asthma and Respiratory Foundation NZ has established the Esther-Jordan Muriwai Ahuru Fund after formally absorbing the Bronchiectasis Foundation last month.
The fund will help families cover costs to support their children living with bronchiectasis.
Asthma and Respiratory Foundation NZ Chief Executive Ms Letitia Harding says the new fund reflects the organisation’s commitment to supporting families affected by bronchiectasis.
“The cost of attending medical appointments and managing treatment can place a huge burden on families, especially when children need repeated hospital care, so we hope this fund will help ease some of that pressure.”
Bronchiectasis remains one of the most serious respiratory conditions affecting children in New Zealand, Ms Harding says.
“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.”
About 140 people die from this disease each year – that’s nearly 3 people each week. About 73 children are diagnosed annually, and 1450 people are hospitalised each year.
The Bronchiectasis Foundation was established in honour of Whangārei woman Esther-Jordan Muriwai, who spent more than 14 years in and out of hospital fighting the condition before passing away in June 2014 at the age of 24.
Despite the severity of her illness, Esther-Jordan became a determined advocate for others living with bronchiectasis.
A kura kaupapa graduate with a degree in Māori Studies, she was also a former Miss Aotearoa and Miss New Zealand beauty pageant contestant, and wrote a book for the children’s ward to help tamariki feel more at ease and supported in preparing for surgery and settling into the ward.
A year after her passing, her parents founded the Bronchiectasis Foundation.
Her father, Camron Muriwai, says handing over the Foundation’s kaupapa to the Asthma and Respiratory Foundation ensures that work can continue to grow.
“Esther-Jordan was always thinking about the next kid who might be going through what she was – she wanted people to understand this disease and how many families it affects.
“The Foundation was our way of carrying on the work she started, so knowing that her name, her legacy, will now help families like ours means a lot to our whānau,” Mr Muriwai says.
“It’s exactly the kind of support Esther would have wanted other kids to have.”
