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. 

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. 

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. 

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. 

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. 

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. 

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. 

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. 

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. 

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. 

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. 

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.)

When Adrianne and her husband had their son Xavier, they discovered he had the incredibly rare condition called Schinzel Giedion syndrome. Children with this syndrome typically don't live past two years old, but Xavier beat those odds and lived to be almost eight years old. Earlier this year he died, just shy of his 8th birthday. In this episode Adrianne talks about his diagnosis, his life and his death. 

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. 

When Eric and his wife found out their newborn son, Liam, had Miller Dieker Syndrome, they didn't react the way many couples would. That's because they weren't like many couples. They had already lost multiple pregnancies and suffered the still born birth of their son Ben. So instead of grieving Liam's diagnosis, they got on with being the best parents to him that they could possibly be. 

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.  

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. 

When Heather Avis and her husband realised they couldn't have children, they turned to adoption. The adoption journey took them to places they never thought they would go and the now have three children, two of which have Down Syndrome. This episode talks about that journey and Heather's upcoming book, The Lucky Few. 

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. 

Artist, writer and art teacher, David Borden lost his daughter to complications of cerebral palsy in 2015, just shy of her 16th birthday. Since then he has been working on a graphic novel, And So We Rise, which chronicles her life and shares her story. 

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. 

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. 

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. 

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. 

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. 

After years of battling to find a diagnosis, Angela and her husband Gabe finally got one for their daughter Ali when she was five years old. Ali had Fibrodysplasia Ossificans Progressiva, and her body was slowing turning itself from muscle to bone.  Now at nine and a half, Angela and Gabe are doing everything they can to keep their daughter mobile and enjoying her life as much as possible. This episode tells their story. 

This episode features the amazingly talented writer, Heather Kirn Lanier, who writes the beautiful blog Star in her Eye, telling her story about her daughter Fiona. Fiona was diagnosed with Wolf Hirschhorn Syndrome, or 4P deletion after doctors noted her small size as an infant. During the episode, Heather explains about Fiona's diagnoses, how she and her husband Justin came to redefine what a "problem" was, and how communication has changed life for Fiona. There's also a brief cameo from Fiona herself. 

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. 

Meghan and her husband Brian never thought they would be moving almost 2,000 miles across the United States for their daughter to be treated with medical marijuana. But when their baby daughter, Vivian started having seizures due to Dravet Syndrome, and standard pharmaceuticals weren't working. That's exactly what they had to.

This next episode is only the second time I have been able to interview a family in person. I drove up to Warkworth, NZ to meet and talk to Stacey Dodd and her son Thomas. Stacey and her husband, Joe, are the parents to Thomas. Thomas is an adorable toddler with fiery red hair who has a number of conditions. He was born at 34 weeks and suffered a major brain bleed. This has resulted in a number of conditions including infantile spasms, epilepsy and cerebral palsy.   Despite the challenges, Thomas is a happy, smiley kid who is turning into a real toddler, in the best possible way. It was so interesting to talk to Stacey as she dealt with these challenges in such a different way to myself. I found myself just in awe of her sense of calm and pragmatism. In this project I wanted to show a variety of experiences so I think it is really important to show experiences that are very different to mine. I am sure there are listeners out there who can relate to Stacey's experience and see something of their own in it. You can listen to the podcast right here. Or subscribe through itunes or Stitcher radio. If you subscribe, take a moment to leave a review, it helps other people to find the podcast more easily. If you want to follow Thomas and Stacey's journey you can visit their facebook page, Minding Thomas or through Stacey's blog.

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. 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! 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.

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. 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. 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. 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. Thanks again to Grayson Gilmour for his music from his album Infinite Life! You can buy his album on iTunes and through his website. And thank you to Enelia from Abacus Finch for the beautiful logo design.

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.[/caption] [caption id="attachment_995" align="alignright" width="225"] 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.[/caption] 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! You can buy his album on iTunes and through his website. And thank you to Enelia from Abacus Finch for the beautiful logo design.

I first discovered Natalie and her beautiful daughter Chiara not long after Eva was born. I was in desperate need to find community and comfort, and Natalie's blog and her sense of realness combined with her beautiful optimism, was a calming balm for me. [caption id="attachment_1015" align="alignnone" width="1092"] Mauro and Natalie with their daughters Grace and Chiara.[/caption] I was struck very quickly with how hard Natalie and her husband, Mauro, work for Chiara. They are tireless (I'm sure the would say otherwise) in their love and care for her. They try everything they can to make their little girl's life as good as it can be. That means they test out all sorts of therapies for Chiara from massage to hydrotherapy and more, and they put in huge efforts to fundraise for equipment that can give Chiara the best quality of life possible. They are the definition of dedicated and act as advocates and champions for their daughter in any way they can. When you read all this you might think it all comes easy to Natalie and that she has always had her act together on this great rollercoaster journey that is special needs parenting. But Natalie shares her vulnerability and moments she wasn't always as positive and confident in her role in Chiara's life. Natalie acknowledged the hard times, while also gushing about how much love she has for Chiara and her family. I got to see both sides and felt an affinity for each one. As Natalie says in the episode, there's one thing this special needs journey is renowned for and it's the ability to experience the most extremes of contradictory emotions all at the same time. It's two sides of a magnet's pull. The bad and the good are inescapably intertwined. Chiara has a number of conditions including: polymicrogyria, microcephaly and quadraplegic cerebral palsy. She cannot walk or talk. She cannot sit unaided. She can smile, boy can that girl smile, but when she's not smiling she is often suffering from issues related to her CP. Natalie wanted to share the beauty of her life, and acknowledge that there are hard days, weeks and months in there too. Natalie and Mauro, it was an absolute privilege to hear your story. If you want to know more you can follow Chiara through her facebook page, Chiara's Journey and through Natalie's blog of the same name. It's not every day you get to meet someone as inspiring, honest and warm as Natalie, or someone as brave and determined as Chiara. Listen right here, or subscribe through itunes or Stitcher.

  This episode marks a special point for the podcast, because Zinzele is the first parent to contact me as a result of the podcast itself. She emailed me shortly after my first episode aired and said she would like to be part of it. This means the show is working! It's reaching parents who need it and creating a community around that common connection. Zinzele's story of her son Adonis, who has Ulrich congenital Muscular Dystrophy, is truly one in a million. [gallery type="rectangular" ids="1846,1839"] My only disappointment with this story is that I didn't do it in person when I was in California over the summer. When you hear about Adonis and see his ridiculously gorgeous smile you will see why. This kid is something else. You can listen to the podcast right here, or subscribe through itunes or Stitcher to have it on your phone. If you do subscribe, leave a review, it helps get the podcast out to more people.

The podcast has had a break. A long break really. But it's back. I am so incredibly proud to introduce my next guest. I met Danae online before Eva was even born. She came to play a very important role in my life, and in Eva's, and I'll be exploring that side of things with Danae on part 2 of this episode. But in the mean time, get to know Danae, Mark and their daughter Lydia with part 1. Lydia, unlike my previous guests, has not been diagnosed with a condition or syndrome. She has intractable epilepsy, brain malformations and diminished white matter, as well as low tone and cortical vision blindness. Danae and Mark are still trying to figure out if there is a condition her issues come back to, but she is thought to have a type of leukodystrophy which refers to the progressive degeneration of the white matter of the brain due to imperfect growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fibres. I was incredibly humbled and lucky to be able to spend a bit of time with this family while I was on my trip. I will never forget that time with Lydia and her family. The Davison family knows they will always have a place to stay in Wellington, New Zealand. I hope they take me up on it. You can find out more about Lydia and Danae on Lydia Unicorn. You can find out more about Kathy Snow, author of Disability is Natural, who Danae and Mark credit for their positivity at her website. Listen to the episode here, or via itunes and stitcher. Subscribe and if you like what you hear, leave me a review!

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 and I met, and the impact she had on my own ability to cope with Eva's diagnosis. The truth is, it was an email from Danae that was the flick of the switch I needed to decide once and for all that I wanted to be Eva's mother, no matter what. I recorded this interview while staying with Danae, Mark, Lydia and Jack in their home outside of Portland. It was a truly exceptional experience for me to meet this woman who had helped me so much, and to meet Lydia, the girl who had inspired Danae's words. It was particularly special, but also heart breaking, because Danae and Mark have found out through a recent MRI, that Lydia's white matter in her brain has all but disappeared, and she is likely to get pneumonia and die due to this. They don't have a timeline or any certainty, they just know their time with Lydia is limited. For me, that meant this was my one and potentially only chance to meet this girl, and thank her in person. Lydia may never know the impact she had on Eva and on me. But I hope Danae and Mark know just what they mean to me. I just wish they could have met Eva too. Later in this part of the episode we explore another project Danae has been involved in, Fierce Love. Danae, along with a group of mothers from United Cerebral Palsy, got together to work with Well Arts to write a play around their experience as parents of children with Cerebral Palsy. Well Arts is a theatre group that partners with organisations and groups in the Portland, Oregon area to tell their stories and share their experiences on the stage. They serve diverse populations, facing a wide range of health and social issues. During the episode you will hear a selection of audio clips from Fierce Love, including part of a scene where Danae and my email conversation first began. The full DVD of Fierce Love is available for purchase. Email Susan Cushman You can listen to the episode here, or subscribe for free through itunes and Stitcher. If you like what you hear, leave a review in itunes and Stitcher, it helps people find my podcast more easily.  

It is my pleasure and honour, and just well I'm giddy, to announce my next guest on the podcast, Rachel Callander, the creator of The Super Power Baby Project. When Eva was just a few weeks old, Ess, who I would soon live with with Eva, sent me a link to this amazing book. It blew me away with its beauty and it's positive attitude. I nervously approached Rachel when the podcast was still just an idea in my head. I wanted to know if she would like to be a part of it. I explained about Eva and that I had seen her work and admired her. She wrote back the kindest, sweetest email saying she would love to be a part. I was nervous about this one. I look up to Rachel, she's somewhat of a role model in the special needs world. For me at the very least. Her positivity and love for her daughter , Evie, shine through. [gallery ids="2182,2202" type="rectangular"] I was so honoured to hear Evie's story, from her birth in 2008 to her death two and a half years later. Since Evie's death, Rachel and her husband Sam have gone on to honour their daughter's memory in the most outstanding way, and it's a legacy I am sure Evie is beaming with pride over. [gallery ids="2196,2188,2192" type="rectangular"]   Listen to the episode right here, or through iTunes or Stitcher Radio. Please subscribe (it's free) to get the downloads straight to your phone or device each month. If you like the podcast, leave a review! You can find Rachel and Sam's project here.