Popping this here for posterity. It went a bit bonkers on Facebook when we posted it. It clearly resonated with many of you… Yet another relative stranger asked last week if Wilf is a ‘good baby’. Hubby replied with,” “Yes, he does all the things a baby should do”, whilst I rolled my eyes in … More For all the ‘Bad’ Babies.
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.