Disability as a unique demonstration of diversity – not misery

By on February 14, 2017

A woman kills her 20 year old daughter and the public’s response is to call it a mercy killing. Donella Knox murdered her 20 year old daughter Ruby, who had severe Autism spectrum disorder and intellectual disability. The Herald reported that Ruby had a number of associated conditions in addition to this. “She also suffered Read More...


Episode 19: Ellie and Beth – life with LBSL

By on February 1, 2017

When Ellie and Mike found out their daughter, Ellie, had a rare form of leukodystrophy called leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation, or LBSL for short, they were devastated. LBSL is a rare genetic disorder that does not allow those afflicted with it to produce a protein essential for production of Read More...

Dear Mamas podcast with guest, The One in a Million Baby

By on January 31, 2017

Before Christmas I got together with two fantastic women, Emily Writes and Holly Walker, on their podcast Dear Mamas which features on The Spinoff to talk about what it’s like to be a parent when someone in the family has chronic illness, medical needs or disability. We discussed Eva and The One in a Million Read More...


Rare Disease Day

By on December 19, 2016

Today I met with someone from The New Zealand Organisation for Rare Disorders, NZORD, to talk about Rare Disease Day in February next year. Rare Disease Day is an annual day at the end of February that is celebrated internationally. NZORD is a space for patients, family, friends, clinicians and researchers in the rare disease community Read More...


Parents sue over birth defect – can we blame them?

By on September 13, 2016

A New Zealand couple living in Australia are suing the medical professionals who allegedly failed to identify the condition for $2.5 million in damages. Their daughter, Aria, who is now two years old was diagnosed with Aicardi Syndrome after an MRI scan revealed the condition. Aria has impaired vision, hearing loss, scoliosis, a dislocated hip and developmental Read More...



We are a top resource for Special needs families!

By on August 19, 2016

I got a lovely email from Total Pediatric Therapy that The One in a Million Baby has been named in their list of best resources for parents of children with special needs. This just made my day. This is exactly why I’ve kept writing and why I started the podcast. Read More...


Ms. Harrari, is it you that gets to define quailty of life?

By on August 8, 2016

On August 6, The Sydney Morning Herald published a story entitled “Parenting an intellectually disabled child: life forever on duty” about Alex Brown and his mother Vanessa. Alex is a 22 year old man who has Sotos syndrome. He is non verbal and has an intellectual disability. He spends week days in a group home and Read More...



Feature in the SOFT UK newsletter

By on June 14, 2016

A few weeks ago I was contacted by a representative from SOFT UK, which is a charity that provides information and support to families affected by trisomy 13 (Patau’s syndrome), trisomy 18 (Edwards’ syndrome) and related conditions. They provide support through the many stages families may find themselves in from diagnosis to bereavements to pregnancy Read More...