The last two weeks have had a beautiful synchronicity (though I suppose that’s not really the right word as I knew both events were happening). I have had the honour of meeting two lovely mothers and their sons who live with Hunter Syndrome just like my Pudding. The newbie Last week in Manchester I met […]

Another RIP

Most of the time lately I’ve been able to feel very positive despite the sword of MPS hanging over us. Pudding is on the trial and we know that this could mean his future is very different from other Hunter’s boys that have gone before him. Even if the trial doesn’t work for him he […]

Hospitals (and play)

I have a little luxury that I indulge in when we’re in Manchester if it’s a long day or we’re there two days running. Our visit last week was a long long day. There was a problem in Pharmacy making up the drug so Pudding wasn’t given his dose until three hours later than usual. […]


Exciting times! Yesterday was Pudding’s second full day at school. Last week he did two mornings and this week we’ve been alternating so we can ease him (and them!) in gently. Despite some encouraging transition sessions and oodles of support from school I have been nervous about him starting. Will he run riot? Will the […]

My boys. Always.

As predicted, this summer holiday has been so much better than last. We’ve had some lovely days out/time away and respite has allowed Twiglet and I to spend time doing some more adventurous outings. And of course it has helped that we weren’t being crushed under the weight of a new diagnosis. The holiday ended […]