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...


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...


Episode 14: Victoria and Ashley

By on October 1, 2016

Ashley Jones and her husband Keith had no idea of the rollercoaster ride they were going to get on when they had their first child, Victoria. Victoria, who is now a happy 22 month old, was born with a tracheoesophageal fistula (TEF) which is an abnormal connection (fistula) between the esophagus and the trachea, and suffered global 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...


The true meaning of beauty

By on May 22, 2016

In the last few weeks I have been taking some active steps to help myself. I could feel, and can feel, a hint of depression crawling back into my chest. I feel tired constantly. I’ve stopped running. I’m drinking too much. I want to change that. I can’t rid myself of grief, and I don’t Read More...


Sign the petition – give Lily a new heart

By on March 22, 2016

I was listening to some people talk about language the other day. They were discussing racial slurs and slurs aimed at the special needs community. They seemed to agree that racial slurs were not ok under any circumstances, but when it came to special needs slurs (we all know which R word I am referring Read More...


We are all different

By on February 21, 2016

There’s this strange dichotomy in the world of special needs. There’s the parent on the one hand who says, “I love my child and wouldn’t change a thing about them”. And then there’s the relieved mother who gets a 12 week pregnancy scan of her second child, after having a first child with CHARGE Syndrome, Read More...


A call for help – Centronuclear myopathy

By on January 21, 2016

I got an email today from a friend. She said there was a family in Wellington who needed help. Their infant daughter, who is 11 weeks, has just been diagnosed with Centro-Nuclear Myopathy.  They have been in the NICU for 11 weeks and while they have a dianogis, there are still so many unanswered questions Read More...