Center Parcs!  We’re here with the extended family – 8 adults and 6 kids, in 2 houses next door to each other. Pudding is having an absolute ball! We had a BBQ this evening, though the weather wasn’t brilliant. After eating, we let him out his chair and he just wandered around, shadowed by my Mum […]

First treatment

What a difference a few days make. Pudding’s first enzyme infusion (ERT) was yesterday and I keep looking at him and seeing a little miracle; knowing that throughout his body there is enzyme working to chop away at the stored GAGs and undo some of the harm that has been building up for the last […]

I want to escape…

Yesterday afternoon while the kids were watching tv and I was supposed to be getting tea, I had the urge to go out the door and just keep on walking. Walking and walking. Anywhere, just to leave all this behind. It hadn’t been a good day anyway. I took Pudding to soft play with some […]


We had our first visit to Manchester yesterday and it was a long tiring day (taking Pudding on the train was always going to be a challenge!). The consultant there, Dr Simon Jones, took great care to explain really clearly what MPS is all about – not much I didn’t know but useful to hear […]

That moment

That moment. That moment when the pediatrician goes to fetch a box of tissues before sitting down to talk to you. That moment where you know this is it, this is real, this is not just a simple mistake on the screening test. I was expecting another couple of weeks before we heard anything, and […]