On the day that would have been Esther-Jordan Muriwai's 25th birthday many people whose lives she touched gathered for the launch of the Bronchiectasis Foundation she started.

Yesterday Ms Muriwai's family, friends, health professionals, dignitaries and the Governor General, Lieutenant General Sir Jerry Mateparae acknowledged her courage and determination.

Ms Muriwai did not live long enough to see her foundation's launch, losing her 14-year battle with the crippling respiratory disease on June 5 last year. But she had pulled together those who would see her dream through, wrote the constitution herself, and teed up the Governor General to be its patron.

Ms Muriwai set up the Northland Bronchiectasis Support Group in 2013. In March 2014 she was presented with an Asthma Foundation Achievers' Award, for bravery. Sir Jerry presented that award at Government House in Wellington, in recognition of her pluck and her efforts to raise awareness about the disease that affects more children in New Zealand than it does in most other western countries.

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Yesterday the Governor General recalled how, when he started to walk toward Ms Muriwai to present the award she waved him away, ordering him to "go, go! I'll come to you."

He was trying to make it easier for her; she, as always, was determined to be treated as normal, he said.

"You don't really tell the Governor General to go away, and not in my house. But I did go," Sir Jerry told the audience about the young woman who later jokingly referred to him as "Uncle Jerry".

He also recounted how she telephoned him to ask him to be the patron of the foundation she was setting up. "I got the strong impression I didn't have a choice."

Sir Jerry ended his informal speech saying: "She was a remarkable person and someone all New Zealanders should be proud of."

The event started with a powhiri at Pehiaweri Marae, then moved to Barge Park where the Muriwai family led proceedings, and tributes to Ms Muriwai were given.

Having grown up with the debilitating illness, Esther-Jordan was aware of the difficulties families experienced without a support network.