The One in a Million Baby

Our lives are full of odds. We buy lottery tickets when the chances of winning are as small as one in 40 million. But when the circumstances are a little different and the odds mean something rare and unusual, like a chromosomal abnormality or a medical condition in our children, we dismiss the much higher odds which can be as high one in 800 because we assume it won’t be us who make up that one. The One in a Million Baby tells the stories of the children and their parents who find themselves as that one in a thousand, or one in ten thousand, or even one in a million position and how they come to cope.
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The One in a Million Baby




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Apr 23, 2018

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. 

Mar 8, 2018

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. 

Mar 1, 2018

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. 

Feb 26, 2018

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. 

Feb 16, 2018

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. 

Feb 5, 2018

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. 

Jan 26, 2018

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. 

Jan 23, 2018

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. 

Jan 14, 2018

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. 

Oct 8, 2017

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 story. 

Sep 30, 2017

Alex knew from early on that Lucy was a unique kid. She was diagnosed with Autism, as her mother suspected, and a few years later she told her parents that she was a girl, she was Lucy. This episode looks at Alex and Lucy's journey, and how Lucy became Lucy. 

Sep 1, 2017

When David and Jane had David Jnr.* they had no idea that anything was wrong. When David Jnr was born with a rare and complex condition that should have been picked up in utero they decided to file a wrongful birth claim. This episode explores what this claim really means for David Jnr and for the family, and what drove them to do it. (*Names have been changed.)

Jul 1, 2017

Developmental neuropsychologist Dr. Robin McEvoy and LEAP specialist Kim Gangwish field phone calls, day in day out, from desperate parents who want to help their children. Their children are struggling either with their behaviour, their education or their attention, and they need to know what to do.

After fielding these phone calls for years, Robin and Kim partnered with writer and trauma therapist, Marijke Jones, and set about creating a resource that would replace that phone call. They created Child Decoded, a resource for parents who want to know where to turn and who to talk to when their child's needs exceed those of a regular paediatrician. In this episode, Robin talks about the creation of the book and the struggles of parenting when you don't know what to do next. 

Apr 23, 2017

When Loretta's son Charlie started behaving in more and more defiant ways, she refused to believe he was just a naughty boy, and sought to find a reason for his anger and aggression. What she found was Oppositional Defiance Disorder with aggression.  

Mar 29, 2017

Unlike most Trisomy 21, or Down Syndrome, diagnoses which tend to happen in utero or at birth, Andrea and her husband Joe didn't get the diagnosis for their son, Kai, until he was already 14 months old. This late diagnosis rocked them, because it forced them to reconsider who their son was and how their lives would look. Andrea tells the story of how they came to realise Kai was what their family had always needed. 

Jan 29, 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.This episode tells the story of the discovery of this diagnosis and what they have done since then to fund research for a cure. 

Jan 1, 2017

After two miscarriages LaTanya and her husband Greg had their son, Tre. After Tre's birth he was diagnosed with arthrogryposis, a condition which causes multiple joint contractures throughout the body. At age seven, Tre was also diagnosed with autism. Through her journey with Tre, LaTanya tells us about how she become her son's advocate and learned to maximise life and experiences for Tre. 

Nov 30, 2016

In this episode the tables turn and Tessa gives up her spot as host and becomes the guest to share her own special needs parenting journey. With special guest host Kelsey Dilts McGregor, Tessa talks about her journey with Eva, from her pregnancy to her diagnosis of CHARGE Syndrome, to her death. 

Nov 1, 2016

For 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. 

Oct 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 toddler, was born with a tracheoesophageal fistula (TEF) which is an abnormal connection (fistula) between the esophagus and the trachea, and suffered global and universal brain damage through the labour process. This episode follows their journey as they came to terms with both her congenital issues and her brain damage. 

Sep 11, 2016

Amy Street is the new web series from Bella Pacific Media which tells the stories of 9 residents at the Supported Lifestyle Hauraki Trust in Thames, NZ. The Trust is houses and takes care of more than 60 adults with disabilities. It's more than just a special needs facility though, it's a home, a community, a place for these 9 people and their neighbours to live their best lives. This episode talks to Viv Kernick and Kirsty Griffin from Bella Pacific Media about their web series Amy Street and what it was like to make it. 

Jun 30, 2016

When Kim and Roy's son Dylan was born deafblind and with heart and kidney abnormalities 20 years ago, they didn't react the way you might expect. The loss of their first son Kyle, and a later miscarriage meant that while some might be plunged into despair, they instead were grateful and full of hope for their son's life. This episode explores their journey with Dylan and all the ups and downs CHARGE Syndrome has brought into their life. 

Apr 4, 2016
It's here! The first ever episode of The One in a Million Baby podcast. It's not perfect, but nothing is. This episode is a starting point, a way to begin. It's my way of introducing listeners to me, to Eva and to our story. It's my way of explaining why I'm doing all this. I'm asking parents on the show to be honest and vulnerable and answer some tricky questions. So it's only fair that I be willing to do the same. This episode gives a brief account of our story and how I got to here. You can listen to it right here or subscribe to it for free through iTunes. Here: The One in a Million Baby - Tessa Prebble If you like what you hear, leave a review. I will soon be making it available on Stitcher radio so that Android users can listen too, but this will do in the mean time. Along with the launch of the podcast comes the launch of the beautiful design and logo work from Enelia at Abacus Finch. abacus-finch-logo@2x Thank you, Enelia, for your time and care and generosity. The logo is perfect for The One in a Million Baby and makes me think of Eva and her fiery spirit. I love it. Thank you also to Grayson Gilmour for the use of the music from his album Infinite Life! You can find Grayson's music on iTunes and through his website. To me, Grayson's album is one full of contradictory feelings, swelling hope alongside sadness and loss. It felt like the perfect pairing for the podcast. Thank you! grayson Thanks in advance for listening. I hope you enjoy it. Now I'm off to celebrate with a martini and put my feet up. I'm hoping to release Episode 01 October 1st.
Apr 4, 2016
Months ago, I emailed a group of mothers who I have met through various means, but mostly through the blog. They all have children with extra needs, whether those are medical, educational, physical, or all of the above. I was planning an essay collection and I wanted to know if they would be willing to take part. The majority were happy to be involved. I started thinking about how it could work and my brain began to hurt. I didn't want to tell each parent what their focus should be, but it seemed clear the book would need some kind of over arching structure. I puzzled over it for weeks until one day I realised maybe it wasn't the project that was the problem, it was the medium. I pictured myself in Eva's hospital room after she was born. I imagined a well meaning social worker handing me a book of essays. I saw that book being accepted by me and then put aside. I didn't have the mental capacity to read. To concentrate on words on a page, let alone pages in a book. I spent hours in that hospital room with Eva. We had naps together, with her lying on my chest. And in those hours, when it was just the two of us, I listened to podcasts. They were company. Voices in my ears when I wanted to block out my own inner voice. They provided me with friends when I couldn't face seeing anyone in person. Remembering those moments, I realised I was focused too much on the writing. It's what I know how to do, so it seemed like the obvious choice. But what if I could translate those same stories into the spoken word and instead of reading a weighty book, the parents I invisioned could listen in the late hours of the night when they were alone and tired and feeling in need of company? I emailed my group of mothers and floated the idea. I felt flaky and amateur, like I was flitting from one thing to the next. I was nervous that these women, who had already been through a lot, would not have reason to trust me with their stories. I hoped I could inspire confidence, but I was worried my inability to stick with one project for longer than a couple of months would cast doubt into their minds. To my delight, they were almost all eager to be a part of it. I updated them as I bought gear and did my research. And then all of a sudden it was time to pick our first guest. Jen Carter from Jacob's Fight put her hand up straight away and I am so grateful for her trust in me. I have no experience in radio. I am trained as a journalist, and I can write, but radio is a brand new thing for me. So while I knew I would do my best to tell her story well, Jen had very little reassurance that I could even do this thing. She put her trust in me to help her tell her story. She allowed herself to be first before she had heard whether I could even do it. The jury is still out on whether I can actually do this, but I was humbled and honoured to discuss Jen's family's life with her. And I am thrilled to be able to share her story with you now. Jen is the mother of Jacob, a gorgeous, happy kiddo who just happens to have both an interstitial lunge disease and Hurler Syndrome. This is a rare degenerative metabolic disease that results in early childhood death without invasive medical treatment. In August 2014 Jacob underwent a bone marrow transplant. This doesn’t cure Hurler Syndrome but it stops the progression of the disease. Jacob will always have learning difficulties and problems with his skeletal structure but the transplant has stopped the neurological decline. During the episode Jen explains her family's decision to go with the bone marrow transplant, as well as what her life is like and what it's like to love a child like Jacob. You'll also hear the occasional squawk from Milo, Jacob's little brother, as the episode goes on. 12038438_10153082737057109_4223807262921700377_n When Jen had Jacob she was quite a bit younger than I was when I had Eva, and in talking to her I was struck by her maturity and grace in such difficult situations. Life doesn't always give us what we thought it would, but Jen and her husband Matt have become the parents Jacob needs and listening to their story I felt inspired and fairly awestruck. image-1 My podcasting skills aren't quite there yet. They don't match the importance of these stories. I'll get there. There are bumps, clicks and crackles that shouldn't be there. Sometimes the cutting isn't perfect and I'm still getting the hang of story telling in this way. But that's not going to stop me. Hearing these stories is more important than putting out a product that is perfect, and after listening to Jen, I'm even more motivated to ensure other people hear them too. 12049509_10153536651886210_3573711738484370573_n 11061985_10152685867882109_6613042353684520097_n This is the first guest episode of The One in a Million Baby podcast. Thanks for listening and reading. Listen right here, or subscribe through iTunes here The One in a Million Baby - Tessa Prebble If you like what you hear, leave a review. You can follow Jen and Jacob's journey at Jacob's Fight - living with Hurler Syndrome. fullsizerender Thanks again to Grayson Gilmour for his music from his album Infinite Life! grayson You can buy his album on iTunes and through his website. And thank you to Enelia from Abacus Finch for the beautiful logo design. top_mommy_blogs_signature_banner (1)
Apr 4, 2016
I first met Cassie when we were both pregnant. I asked a panicky question about nuchal measurements in a Huggies mothers' forum and she was one of the people who replied. At the time she was in hospital on bed rest at around 24 weeks pregnant. We started emailing and soon both our journeys started to get complicated and hard. Cassie was dealing with very different things from me, but we bonded over a shared experience of adjustment and grief. While we were doing different things and dealing with varying circumstances, we were honest with each other about our fears, or disappointments, our grief. I cried as I read her emails, and as I typed my own. Cassie is a fantastic person, a great nurse, and a wonderful mother, and I am so amazingly proud to have her on the show and to share her and her husband Antony's story. Cassie's son, Thomas, has quadriplegic cerebral palsy. In this episode she speaks with beautiful honesty about her experience and how her feelings have developed over time. Here's some pictures to help you see her lovely family. Thomas is the younger brother to his lovely sister, Charlotte. [caption id="attachment_996" align="alignleft" width="281"]The first photo taken of Thomas. Cassie mentions this photo in the episode. Thomas was intubated and fighting for his life. The first photo taken of Thomas. Cassie mentions this photo in the episode. Thomas was intubated and fighting for his life.[/caption] [caption id="attachment_995" align="alignright" width="225"]Despite a rocky start, it wasn't long before Thomas was breathing for himself. Despite a rocky start, it wasn't long before Thomas was breathing for himself.[/caption] [caption id="attachment_991" align="aligncenter" width="660"]Thomas showing off his sitting and motor skills. Thomas showing off his sitting and motor skills.[/caption] 12096399_1190668950949476_3984049493916236895_n DSC_0725 Listen to the episode here, or subscribe through itunes here: The One in a Million Baby - Tessa Prebble or through Stitcher Radio. If you like what you hear, leave a review! You can follow Thomas's journey through his facebook page, Follow Thomas. Thanks again to Grayson Gilmour for his music from his album Infinite Life! grayson You can buy his album on iTunes and through his website. And thank you to Enelia from Abacus Finch for the beautiful logo design.
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