Sometimes I feel so scared when Pudding hits out. He does it in frustration when I say no to food, or TV, or need to change his nappy. It’s not just my concern about being hurt – which is a real one. (I’ve had my glasses kicked into my nose, leading to bleeding; I’ve been […]


Just as I think the drive to Manchester is becoming routine, for the next 7 weeks they are shutting one of the roads so I’ll have to find another route through Manchester. Hoorah! Otherwise things are settling in. After last time when Claire, another ERT nurse, got the line in first time they didn’t bother […]


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 […]

Still waiting

Is it good for me, all this reading? I keep looking at the Society’s website, even though I practically know it by heart now. What do I expect? Some new miracle cure to pop up? I don’t know. I guess on some level I’m thinking knowledge is power. The more I know, the more I […]

Day by day

Days go by now when I feel entirely normal. I still know what’s looming over us, but it’s like I can process it somewhere else, a part of my mind that is separated off and unemotional. Other days, like today, it threatens to overwhelm me again. Hubby is back at work today after a week […]


5.30am is becoming depressingly familiar. Though to be fair, it’s better than 2am. I come to consciousness and for a while lie there listening to the birds, being gradually aware of the sun on the curtains, and then boom, the knowledge is back with me. Or rather, the not knowing. It can be so paralysing. […]