Episode 21: Kai and Andrea – life with Trisomy 21
For most parents of children with Down Syndrome, a diagnosis comes while they are still pregnant, or at birth. Down Syndrome is common enough, and recognisable enough, that it very rarely is diagnosed later.
For Andrea and her husband Joe, they were that example of rarity. When their son Kai was born, any questions were brushed aside, and it wasn’t until he was 14 months old that they got a formal diagnosis.
This late diagnosis of their healthy baby rocked Andrea and Joe. Getting a diagnosis like this means you have to rethink who your child is and what their future will look like. It’s heartbreaking and confusing, because your child is still your child, nothing has changed except your knowledge of their chromosomes.
In this episode Andrea tells of how she went into “doer” mode in her efforts to come to terms with her son’s new identity and diagnosis, and ensure he was as happy and healthy as possible.
Episode 20: Heather and The Lucky Few
Episode 20 transcript When Heather Avis and her husband realised they couldn’t have their own biological children they t
Episode 19: Ellie and Beth – life with LBSL
Episode 19 Transcript When Ellie and Mike found out their daughter, Ellie, had a rare form of leukodystrophy called leukoencep
Episode 18: Savannah and David – And Yet We Rise
Episode 18 Transcript. It is my very great pleasure to bring you our first Dad on the show. David Borden is a writer, artist
Episode 17: Tre and LaTanya – living with arthrogryposis and autism
Episode 17 Transcript LaTanya and her husband Greg had two miscarriages before having their son, Tre. When he was born, it bec
Episode 16: Eva and Tessa with special guest host Kelsey Dilts McGregor
Episode 16 Transcript I have had the honour of featuring so many amazing families on my show. Each parent has shown a level of
Episode 15: Frankie and Carrie – living with Mowat Wilson and West Syndromes
Episode 15 Transcript When Carrie Avila-Mooney first got in touch with me, she said was a listener of the podcast and that she
Episode 14: Victoria and Ashley
Episode 14 Transcript Ashley Jones and her husband Keith had no idea of the rollercoaster ride they were going to get on when
Episode 13: Amy Street with Bella Pacific Media
Episode 13 Transcript I’m interrupting the normal once a month episode pattern with a special interview with Viv Kernick
Episode 12: Ali and Angela – living with FOP
Episode 12 Transcript There’s a certain belief in the special needs world that it’s wrong to want to change your
Episode 11: Fiona and Heather – living with Wolf Hirschhorn Syndrome
Episode 11 Transcript I have been reading my next guest’s blog Star in her Eye for so long now, I don’t know when
Episode 10: Dylan and Kim – life with CHARGE Syndrome
Episode 10 Transcript. It gives me immense pleasure to share this next episode. It features a fellow CHARGE parent, Kim Lauger