Episode 15: Frankie and Carrie - life with Mowat Wilson and West Syndrome
Release Date: 11/01/2016
Education: Ep07 with Denise Astill
The One in a Million Baby
Denise Astill is the founder of FACS, an organisation set up to support and raise awareness for Foetal Anti-Convulsant Syndrome. Her twin daughters were born with the funding and qualify for ACC funding. But she knows that many families miss out on this vital funding.
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Education: Ep 06 with Carla McNeil
The One in a Million Baby
Carla McNeil comes to this conversation as a mother, an educator and now a professional advocate for children with dyslexia in her role at Learning Matters. In this episode she talks about what she sees as the key issues in the classroom for teachers and learners when there is a learning difference present.
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Education: Ep 05 with Kerry Hodge
The One in a Million Baby
Kerry Hodge and her family were dreading the new school year without the necessary supports for her son, Felix. In this episode she talks about the struggle to get new supports and how she feels lucky, but really it shouldn't be about luck, these kinds of supports should come standard.
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Episode 30: Paula Tesoriero - New Zealand's Disability Rights Commissioner
The One in a Million Baby
Paula Tesoriero is New Zealand's Disability Rights Commissioner. In this episode she talks about what she intends to do in the role and how she came to terms with her own disability caused by amniotic band syndrome before she was born.
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Education: Ep04 with Tansy Sayers
The One in a Million Baby
People buy houses in specific zones for the schools they offer their children, but when you have a child with learning disabilities and complex needs in New Zealand, you may have to move entire cities just to get your child an equitable education. This is the story of Tansy Sayers, her son Charlie, and their move from the Wairarapa to Wellington to get Charlie the education he deserved and needed.
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Education: Ep 03 with Beth Armstrong
The One in a Million Baby
Beth Armstrong struggled to find equitable education for her daughter Molly. They tried one school after another, and despite some valiant efforts on the part of the schools and teachers, it wasn't until she reached high school, where there was a dedicated unit for students with disabilities and complex needs that Molly started to flourish. In this episode Beth tells her journey of trying to find equity for Molly in a system which doesn't give many options.
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Education: Ep 02 with Rebekah Corlett
The One in a Million Baby
Rebekah Corlett is a fierce advocate for disability rights and equity in education. She does this on behalf of her daughter Sophia, but also on behalf of other children and teens in New Zealand who aren't getting a fair shot in the education system.
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Episode 29: Pierce and Nicole - life with Moebius Syndrome
The One in a Million Baby
At 20 weeks pregnant, doctors told Nicole and her husband Ben that something was wrong with their child's brain. When Pierce was born he struggled to breath, and at six weeks he had a tracheostomy. But it wasn't until Nicole googled facial paralysis when Pierce was 6 months old that they discovered he had Moebius Syndrome. This episode, released for the 24th of January, Moebius Syndrome Awareness Day, tells their story.
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Education: Ep 01 with Emily Writes
The One in a Million Baby
To kick off this short series on education in New Zealand and the challenges parents, kids, teachers and teacher aides have, we've got Emily Writes, author of the brilliant Rants in the Dark, and fierce advocate for her children.
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Episode 28: Jasmine, Mylee and The Grief Project
The One in a Million Baby
Jasmine Platt's daughter was diagnosed shortly after birth as having a catastrophic brain condition known as burst suppression. She was devastated to learn her daughter would never walk or talk and they would never know how she perceived the world. Now, six years later, Jasmine is on a mission to help NZ parents who are given a complex disability diagnosis for their child, to get therapy to help them cope. At present, in NZ, there is no specific funding for this kind of grief, and Jasmine is trying to ensure that other parents in her shoes get the mental health support they need. This is her...
info_outlineFor the first 18 months of Carrie and Gabe's son, Frankie's, life, he was in and out of hospital trying to get on top of infections and seizures caused by a rare combination of Mowat Wilson Syndrome and infantile spasms, or West Syndrome. Now, they have been out of hospital for 6 months and are sharing their story here.