Episode 13: Amy Street with Bella Pacific Media

By on September 11, 2016

I’m interrupting the normal once a month episode pattern with a special interview with Viv Kernick and Kirsty Griffin from Bella Pacific Media. Bella Pacific Media have just released their web series “Amy Street” which features eight episodes that tell the story of nine residents of the Supported Lifestyle Hauraki Trust in Thames, NZ. Each 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...


Episode 5: Lydia and Danae – Part 2

By on February 12, 2016

[podcast src=”https://html5-player.libsyn.com/embed/episode/id/4143354/height/360/width/480/theme/standard/autoplay/no/autonext/no/thumbnail/yes/preload/no/no_addthis/no/direction/forward/” height=”360″ width=”480″]In the first part of this episode I introduced Lydia and her mother Danae. We heard about the challenges they have faced not having a diagnosis for Lydia, and how they have come to cope with her relentless seizures. In this part of the episode I explore how it is that Danae 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...


The full forceĀ 

By on December 27, 2015

So many of the mothers I am visiting on this trip have worried about how I will cope being around so many children. They have been concerned, quite realistically, that being around healthy, happy kids will be upsetting to me and remind me of what I have lost.  Truth be told, I don’t find it Read More...


The City that never sleeps

By on December 22, 2015

They say NYC is the city that never sleeps. I don’t know that I’ve been making the most of that aspect of the city, but it did make me think of other things. This city is so big. There are so many people in a relatively small area. Buildings loom over you almost everywhere you Read More...