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...



Episode 18: Savannah and David – And Yet We Rise

By on January 17, 2017

Episode 18 Transcript.  It is my very great pleasure to bring you our first Dad on the show. David Borden is a writer, artist and art teacher who lives in Austin, Texas. His eldest daughter, Savannah had Cerebral Palsy and died in March 2015, age 15. David writes about his daughter and about life at Read More...


Episode 17: Tre and LaTanya – living with arthrogryposis and autism

By on January 1, 2017

Episode 17 Transcript LaTanya and her husband Greg had two miscarriages before having their son, Tre. When he was born, it became clear there were issues and he was diagnosed with arthrogryposis¬†multiplex congenita, which meant that some of his joints didn’t move as they should. When Tre was seven he was also diagnosed with autism, 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...


Episode 16: Eva and Tessa with special guest host Kelsey Dilts McGregor

By on December 1, 2016

Episode 16 Transcript I have had the honour of featuring so many amazing families on my show. Each parent has shown a level of vulnerability and honesty that I could not have expected, but was so grateful for. They speak, unscripted, about their child and their experiences, whereas I get to write my intros and Read More...


The hardest thing

By on November 29, 2016

On Thursday a new episode of the podcast will come out. Instead of asking the questions, this time I will be the one telling my story. I asked my talented friend Kelsey Dilts McGregor to help me and step in as the host for this episode. Towards the end of our conversation she asked me, Read More...