04/06/2020
Six years ago our beautiful wahine grew her angel wings. I always struggle for words on this day as my heart is full of sadness and I find it difficult to put emotions into words. So, instead, today I am sharing with you an essay that my daughter Katie (16) wrote about Esther-Jordan. It is two years old, but it is a good way to celebrate the life of an amazing, beautiful, inspirational, friend.
Katie was 14 when she wrote this essay.
Sending much love to Esther-Jordan's whanau and friends today.
Lisa 🌸
Who is Esther-Jordan?
Esther-Jordan Muriwai was a really beautiful, nice and kind lady. She was in her early 20’s when I first meet her. We couldn't really talk in person because we both had the same lung disease. There was a risk that we could pass on a bug or something that would make either one of us sick. So, when we met up we had to wear hospital masks. We would often be in hospital at the same time so our parents would meet up and talk about us and how we were doing, and just normal chit chat as well. Esther-Jordan wanted to make a support group for adults and children affected by Bronchiectasis, so my mum said that she would help. Me and my mum first heard of her through the Northern Advocate newspaper when I was 8. That is how we got in contact with each other.
Why is Esther-Jordan a hero?
She is a hero to me because she was my inspiration when I got diagnosed with the same lung disease as her. She was ambitious, she strived to do anything she could and live her life to the fullest, despite being chronically ill. She inspired lots of people to set goals and reach their dreams, particularly those affected by Bronchiectasis. Her passion to inspire people made her famous in New Zealand. She started the first online support group for Bronchiectasis in New Zealand, the Northland Bronchiectasis Support Group (now called the Bronchiectasis Support Page NZ). Her dream was to form a Bronchiectasis Foundation here in New Zealand. Unfortunately, she passed away before her dream became a reality, but her parents continued on with her wishes and the Bronchiectasis Foundation of NZ was formed in 2016.
What is Bronchiectasis?
Bronchiectasis is a lung disease caused by scarring which widens the airways in the lungs, causing little pockets which get filled with mucus (sputum) which gets infected. It can sometimes be fatal if you pick up a deadly bug (I have picked up a couple in the past) and it can sometimes affect the lifespan of a person. Bronchiectasis is a chronic illness that you can be born with or get when you are a child or adult. I find that people with Bronchiectasis have usually been diagnosed when they were a baby or pre-schooler or around 7-9 years of age. symptoms of Bronchiectasis include an increase in sputum production, blood in the sputum, shortness of breath, chronic wet cough, the body can be weak, fatigue and tiredness, and recurrent lung infections. Bronchiectasis is a relatively new disease and only recently have scientists started looking into it to find more about it, and how to prevent it. It is really hard to get a diagnosis for Bronchiectasis because it has not been researched properly yet. Cystic Fibrosis (or CF) is similar to Bronchiectasis, but worse. CF affects the definitely affects the lifespan, it also affects the pancreas and digestive system, as well as the lungs. Because Cystic Fibrosis and Bronchiectasis are so similar it is hard to tell if you have got one or the other. I have had the sweat test for Cystic Fibrosis five times and my results were 1 x positive, 3 x negative and an unreadable test. I have also had gene testing for Cystic Fibrosis which was negative.
How did Esther-Jordan die?
Esther-Jordan died in Whangarei Hospital of Bronchiectasis, Primary Ciliary Dyskinesia, and Pseudomonas. Primary Ciliary Dyskinesia is a condition where the tiny hairs (cilia) that stop bacteria and foreign objects from entering the lungs, are damaged or do not exist. Pseudomonas is a bacteria that can be fatal to patients with Bronchiectasis and Cystic Fibrosis.
What is Esther-Jordan’s DOB & DOD?
Esther-Jordan was born on 7th April 1991 and passed away on 5th June 2014.
How can I relate to her?
We both have/had Bronchiectasis. Unfortunately, Esther-Jordan died when she was 24 years old. Bronchiectasis made us both resilient and ambitious, wanting to live our lives to the fullest despite our lung disease. She gave me good advice on how to look after myself so I wasn’t sick so often. We shared ideas on how to help others affected by Bronchiectasis.
What is her background?
Esther-Jordan Muriwai was of Maori ethnicity. She was born and raised in Whangarei. She attended the Maori language school in Tikipunga, Whangarei then went on to study at Waikato University. She lived in Whangarei with her parents Ana and Camron, and her siblings.
What has she achieved?
Diploma in Matauranga Maori
Bachelor Degree in Mātauranga Maori
21st Birthday
Entering and competing in Miss Aotearoa New Zealand 2012
Becoming 1st Runner Up
Translating a Resource Book into Maori for the Whangarei Children’s Ward
Celebrating 24 years of a life living with Bronchiectasis
Entering and competing in Miss World NZ 2013
Forming the Northland Bronchiectasis Support Group
Competing in Miss Earth NZ 2013
Photo: Katie and Esther-Jordan - February 2013
