28.02.2017 World Rare Disease Day: Our Genetics Journey, Part 2.

If you haven’t read Part 1 on this post, it is available here. Now, we’re fast forwarding from the point where we discovered we were having a daughter, past her birth in September 2015, up to November 2016… – We had previously agreed that, regardless of Primrose’s age, we would begin trying for another baby … More 28.02.2017 World Rare Disease Day: Our Genetics Journey, Part 2.

28.02.2017 World Rare Disease Day: Our Genetics Journey, Part 1.

This Tuesday is World Rare Disease Day. It’s a poignant one for my family and many others… From a young age, I’ve known that there was a possibility of me carrying Pelizaeus Merzbacher Disease (PMD), the condition that means the sufferer has no myelin that caused both my uncle and my brother to pass away in infancy. Similar … More 28.02.2017 World Rare Disease Day: Our Genetics Journey, Part 1.