I frequently struggle to articulate what Pudding is really like. How can  I describe such a gorgeous little lump adequately? So today’s post is a little bit different. I’ve let some other people describe him: Twiglet (nearly 6) says, He is very friendly and cute. He’s not like everyone else’s little brother because he’s got […]

Who am I?

Who am I? Who am I?  Not Jean ValJean, that’s for sure. But when I was listening to Les Miserables the other day, I realised that he had a point. We all need to be defined by something, and that something is ourselves. As with many mothers with young children I ended up subsuming my […]


It was Pudding’s birthday this week, and I’ve been surprised by some of the emotions it has thrown at me. Facebook of course delivers memories to me of previous years and previous birthdays. I look back at them and wonder how this can be the same family; they have never heard of MPS or Hunters, […]


Hospitals are strange places. When you spend longer than a few hours in one, time seems to stretch and contract in different ways. You enter a suspended state of animation where the hours are measured by the next set of obs (temperature, blood pressure and oxygen levels – every four hours), other tests or the […]

Wish us luck…

So this is it. We’re heading off to Manchester again later today. This could be the first week of the rest of Pudding’s life. The first dose of a monthly enzyme that could potentially halt the progress of this horrible disease. We’ve known about this trial ever since we first sat down to talk with […]


I place him on my bed and pull the covers up over him. He snuggles down with a grin so wide it screws his eyes up. I lie down next to him and close my eyes. Sometimes he resists his afternoon nap; he’ll slither off the bed, throw cushions off the chair and clamber up […]