March 18, 2024
Rare disorders sparks fight for answers
It’s Rare Disorder Month, and the mother of a girl with a unique condition says it’s important the health system finds room for the 300,000 people who live with one of 7,000 rare disorders.
Hariata Wooller’s 10-year-old daughter is the only person in Aotearoa with a mutation in her KDM6B gene which caused developmental delays and intellectual disability.
When she was two an observant Plunket nurse helped confirm her feeling her tamariki was different, but identifying the actual disorder and getting the appropriate support took years – and came as huge relief.
“You can actually tell people ‘this is what my daughter has,’ instead of sitting tyhere going ‘I don’t know – ask me in a couole of months when I know.’ As Maori you fight for everything for your child regardless and we fight for making sure she has everything she needs. We fight to make sure she is being heard,” Ms Wooller says.
She wants to see Government support for a centre of expertise for rare and undiagnosed disorders, which is one of the aims of a strategic plan being developed by the Ministry of Health with extensive inuput from Rare Disorders New Zealand and affected whanau.