Who better than Governor-General Sir Jerry Mateparae as patron for the newly-formed Bronchiectasis Foundation, which was formally launched today.
It was also the realisation of a long-held aspiration of Esther-Jordan Muriwai who was recently lost to this chronic disease.
Today, the goal of Esther-Jordan Muriwai to create a national group to address the disease that had a debilitating effect on her body was realised.
Cameron Muriwai says, “As time was coming closer, I think she began to realise what do I want to leave behind? What do I want to say? What do I want to give to the world?”
Other than the Queen of England, the Governor-General says Esther was the only other woman to order him around.
Dr Lance O'Sullivan says, “It's a happy and sad day today. Her passing is fresh in our memory and we're also looking forward to all the benefits that will come from this foundation.”
It's only 10 months since Esther has passed on but she made a request to the Governor-General to stand as patron for her project.
Sir Jerry Mateparae says, “There wasn't an option not to coming to the party and I was really, really pleased to be able to come up here today.”
Dr O'Sullivan says, “Its a massive achievement for Māori and all the people of the Pacific. I think the main purpose of this group is to increase education and support for families like Esther's and others.”
Of Te Pōpoto, Te Rarawa and Ngāti Porou descent, today is Esther's 25th birthday. Despite her short time in the physical world, she had first-hand experience of the struggles families affected by the debilitating disease have to go through.
Cameron Muriwai says, “She never ever wanted a child to ever walk alone or a family to be on their own. So it is very important to her and to us that the foundation is born today.”
A foundation has been born on her birthday that will leave a legacy.