Rare Gems™ – Family stories

Would you like to share your story?

NZORD is collecting stories for this website and for the NZORD site from families and rare disease patients to help other patients and families with their own journey.

Five families have shared their stories with NZORD over the years:

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.

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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.

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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.

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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.

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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.

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If you’d like to share your story, please contact enquiries@nzord.org.nz.

You can find more families’ stories via the links in our support group directory.