Raising Awareness

Rare Disease Day – my speech

Rare Disease Day – my speech

Last week I gave a speech for the New Zealand Organisation for Rare Diseases on Rare Disease Day. It was just 3 days after Eva’s anniversary and I was a bit worried about how I would cope. I managed to get through till the last paragraph before I cried, so… Read more

Disability as a unique demonstration of diversity – not misery

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… Read more

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

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… Read more

Rare Disease Day

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… Read more

Parents sue over birth defect – can we blame them?

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,… Read more

Radio NZ Interview

I did this today. I went on Radio NZ and talked about the podcast live on air. I talked about Eva, about parenting about relationships. I was nervous, but it was a fantastic experience. Thank you to RNZ for having me! Read more

We are a top resource for Special needs families!

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?

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… Read more

We can’t just condemn

Satoshi Uematsu, 26, killed 19 people and injured another 26 in a centre for disabled people near Tokyo, Japan, this week. He did so under the premise that he wanted “to rid the world of disabled people”. In February he sent a letter to a politician outlining his plan. He… Read more

Feature in the SOFT UK newsletter

Feature in the SOFT UK newsletter

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… Read more

Words matter

In the New Zealand media, a city mayor recently came forward admitting he had been wrong. He said he had been dismissive of the needs of Maori. He called himself a recovering racist. He asked for the people of New Zealand to think about their own actions. Andrew Judd did something… Read more

Let’s show her what it really looks like

Since posting my letter to Education Minister Hekia Parata, I have had a brain wave. Someone mentioned I should start a petition and I like that idea, but then I got another comment. A mother told me about her two kids who both have special and extra needs. She said… Read more