Rare Disorders NZ publishes guide for parents and caregivers

Dame Cindy Kiro hugs Misty Kimura, whose daughter Khy Noa lives with a rare chromosomal condition called Trisomy 9. Photo / Supplied

To mark the beginning of Rare Disorders Month, Rare Disorders New Zealand has published a guide for parents and caregivers to help navigate the path in caring for a child with a rare disorder.

The guide, called Raising a child with a rare disorder: A guide for parents and caregivers living in Aotearoa New Zealand, was launched at Government House yesterday.

One parent who contributed to the guide is Misty Kimura, whose daughter Khy Noa lives with a rare chromosomal condition called Trisomy 9. Khy Noa was the first New Zealander and is the only Māori to be born with this condition.

Kimura shared the story of her whānau at the launch. She demonstrated the importance of coming together to shine a light on the issues faced by whānau with rare disorders with the whakataukī, Ehara taku toa i te toa takitahi, engari he toa takitini, - Success is not the work of an individual, but the work of many.

Rare Disorders NZ chairman James McGoram, Rare Disorders NZ chief executive Michelle Arrowsmith, Governor-General Dame Cindy Kiro, and parent Misty Kimura at the launch of a new parents guide. Photo / Supplied

Rare Disorders NZ patron Dame Cindy Kiro hosted the event with invited families and members of the rare disorder community to celebrate the occasion.

Kiro said, “I am pleased to see this as a publication. We have some way to go, this will address issues from care, diagnosis and treatment.”

The parent and caregiver guide features advice around issues such as dealing with diagnosis, communication with family, asking questions at appointments, and accepting support.

Kiro offered words of encouragement for whānau dealing with a rare disorder, and reiterated the importance of the work done by family and friends of the rare disorder community in attendance.

“This guide will help people navigate a pathway forward. When others read of your story they will know they can do it too.”

Kimura is working with Rare Disorders NZ to release new iterations of the parent guide with a te ao Māori lens that she says will “ensure we stay connected to our culture”.

Kimura hopes Rare Disorders Month will shine a light on how whānau Māori living with rare disorders need tailored support.

“We need a wrap-around service and cultural sensitivity and we need awareness.”

Rare Disorders NZ (RDNZ) is calling on Aotearoa to Glow Up and Show Up for the rare disorder community throughout March in recognition of a population it says has been left in the dark for too long.

The month is an advocacy and support period for the more than 300,000 New Zealanders who live with one of 6000+ rare disorders - with half of those affected being children.

The guide for parents and caregivers is available for download on the raredisorders.org.nz, alongside comprehensive guides detailing how to #GlowUpShowUp for Rare Disorders Month.