Episode 04: Lydia and Danae - part 1

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!