New guide for parents and caregivers of children with rare disorders launched

Eight year old brain tumour patient Juniqwa Manning and her mum Julita chat with Governor General Dame Cindy Kiro and Rare Disorders NZ CEO Michelle Arrowsmith at Government House, Wellington.

Brain Tumour Support NZ was delighted to attend the launch of Rare Disorders NZ’s new booklet “Raising a Child with a Rare Disorder” at a morning tea hosted by Governor General Dame Cindy Kiro at Government House, Wellington. The event took place on 28th February 2023 to mark International Rare Disease Day.

The booklet is a comprehensive guide for parents and caregivers caring for a child with a rare disorder in New Zealand. It contains insights and advice from parents and caregivers who generously shared their experiences of navigating the often difficult pathway through the health system. Copies of the guide can be downloaded from the Rare Disorders NZ website.

Julita and Juniqwa Manning

“Brain Tumour Support NZ congratulates Rare Disorders NZ on the launch of their new guide for parents and caregivers. This is a much needed resource for families impacted by the diagnosis of a rare disorder,” said Chris Tse, chair of Brain Tumour Support NZ.

“Brain tumours, by definition, are rare diseases and brain tumour patients face many of the same challenges as people diagnosed with rare disorders. Among these are delayed or mis-diagnosis, lack of effective treatments and lack of clinical trials. We stand together with Rare Disorders NZ in advocating for better outcomes for all patients with rare disorders in Aotearoa New Zealand,” Chris said.

In her opening address, Her Excellency Dame Cindy Kiro, the patron of Rare Disorders NZ, said she was pleased to see the four cornerstones of Māori Health: te taha wairua (spiritual dimension), te taha hinengaro (psychic dimension), te taha tinana (physical dimension), and te taha whanau (family dimension) reflected in the booklet.

Brain Tumour Support NZ chair Chris Tse and his wife Lynda with Juniqwa Manning

Two special guests at the event were 8-year-old Juniqwa Manning and her mum, Julita. Last August, Juniqwa was diagnosed with a medulloblastoma, a malignant childhood brain tumour, and is currently undergoing treatment at Auckland’s Starship Hospital. It was their first ever visit to Government House and Julita said they were excited to meet the Governor General in person. Dame Cindy presented Juniqwa with a gold pin to keep as a memento of her visit.

Rare Disease Day also marks the start of a month of awareness raising activities throughout March. Rare Disorders NZ has designed an awareness raising campaign called “Glow Up and Show Up” to put a spotlight on rare disorders and the issues important to the rare disorder community.