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. 

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 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. 

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 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. 

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.

  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.

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.