An end to hope?

I like being right. Most of us do, don’t we? Yet there have been a few too many times in the last few years where I have hoped, desperately hoped, that I was wrong. When our paediatrician first mentioned mucopolysaccharidosis to us, I of course googled it. I saw pictures of other children with this […]

Infusion day

Another Friday, another infusion. A few people lately have been asking about Pudding’s treatment, so I decided it’s time for a blog post about it! Hunter Syndrome means that he is missing a particular enzyme that goes by the snappy name of iduronate-2-sulfatase. The enzyme would normally clear away waste sugars once they have been used […]

Sleep (again)

So, any regular readers will have been waiting on tenterhooks for an update on how Pudding’s move to his own room went and whether we’re getting any sleep. Or, more likely, will have completely forgotten about it…. After a massive clear-out of the office (which has now taken over our bedroom), Pudding moved in just […]

KEEN

I don’t often think about my time at university. Hey, it was so long ago now that I can barely remember it anyway! Yet recently something has happened to take me back. Oxford twenty-five years ago. At Freshers Fair I came across a stall for KEEN – a student-run organisation that put on sporting and […]