Other New Zealanders’ stories

These are the stories of ordinary New Zealanders taking extraordinary steps in the face of adversity. The message that is common to these stories is that with determination and energy, and by working to achieve co-operation from others, we can make a difference to the knowledge, diagnosis, clinical care and research, of the rare disorders that affect us and our families.

For many people the diagnosis of a rare disease is a major shock. Often there is a feeling of loss of control of your life, and feeling a victim of the situation. These stories show that we can begin to turn the tide against conditions for which little has been known in the past, and little hope offered. Increasing genome knowledge, modern biotechnology and collaborative partnerships with health professionals and researchers, are helping us to gain control over the diseases that we have previously just been the victims of.

Without doubt, this century will see rapid progress in treatment and control of rare disorders.

Click on the links below to read the stories of some New Zealanders who are a part of this change. And if you would be willing, we would be delighted if you would share your own story.

Humphrey Hanley A hairy Irishman, a Wellington sportsman, and a man with EB fundraise for charity

Humphrey Hanley and James MacAodhagain enlisted the help of Ardie Savea to fundraise for DEBRA, a charity dedicated to epidermolysis bullosa, EB, a rare genetic condition that causes skin to blister and peel.

Read about their fundraising effort, from the Dominion Post...


When Finlay Aitkensen was born without a pancreas or gall bladder, his situation looked desperate. Finlay however defied the odds, and with a diagnosis of Pancreatic Agenesis, Finlay’s family has been able to join a network of families with similar experiences.

Read Finlay’s father’s account of Finlay’s birth and diagnosis...

Therese and Joseph BoonSiblings defy the odds to graduate

Brother and sister Joseph and Therese Boon, who share the rare genetic disease Friedreich's ataxia, have beaten the odds to graduate from Victoria University. They have vowed to beat their disability by walking in their graduation parade and when they take the stage to accept their degrees.


Archer familyDying girl's life celebrated every week

Four-year-old Katie Archer is given a birthday party every weekend because her family has a lifetime of birthdays to make up for. Parents Brett and Lisa are coming to terms with a diagnosis of late infantile Batten disease - an extremely rare degenerative neurological condition which affects only one other child in New Zealand, that the Archer’s know of.


Photograph of Lisa Gray and her mother, Bronwyn.Saving Lisa - One woman's fight against LAM

Even on the blurry video screen, Bronwyn Gray could see her daughter moving through the arrival hall at Auckland International Airport unusually slowly. Leaning slightly on the trolley with its stack of suitcases, yellow duty-free bags and bottles of French merlot, the young woman with the bouncy chestnut curls and wide smile was inching forward.


Hayden,_David_and_Sarah Jenny_and_Paul One Family's Journey with Mucolipidosis type 3

In 1987, doctors gave Nelson couple Jenny and Paul Noble a diagnosis of a rare disease, Mucolipidosis type 3, in two of their three children. They had a choice of accepting the advice to just get on with their lives as best they could, or searching for information and treatments for their children.


Photograph of Gillian Deane holding a photo of her daughter Kristen.Family funds research into "lost girls"

Kristen Deane was born with the world at her feet. The only child of New Zealand's "Mr Business" Roderick Deane and his artistic wife Gillian, the potential which lay ahead as her life unfolded would have been boundless. But at about 18-months-old, when her peers were getting the hang of building with blocks, she began to drop them. The little girl started to wake, screaming, in the night.


Dave Hill. Dave Hill's experience with Superficial Siderosis

From Dave Hill's experience with Superficial Siderosis, and his desire to know more and to help others, came an international network and a mine of information.