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 […]

Rare

When you leave your house today, as you go to work or the shops, look around. 1 in 17 people could, at some point, be affected by a rare disease. In Europe that’s defined as one that affects fewer than 1 in 2000 people. So how do you spot someone with a rare disease? The […]

Healing for the Soul

I haven’t posted on the blog for nearly 2 weeks. Not the first time that it’s been that long but it does feel a bit weird. Sometimes gaps have been because we’ve been busy. But sometimes it’s because it can be hard to admit to what I’m really thinking. Hard thing to admit # 1: […]

My Valentine

Last year in February, the month of love, I wrote a post and quoted a Wet Wet Wet song ‘Love is all around me’. I read it again recently and I’ll be honest, I had a lump in my throat. The love and support I’ve had from those around me have made so much difference […]

What’s on your mind?

For a while now there’s been one question that I’ve wanted to know the answer to more than anything. More even than the ‘What does the future hold?’ question, which I have sort of accepted that I will never know. The question is ‘What goes on in Pudding’s head?’ I live with him and love […]

Birthday planning

I find it hard to believe that my little Pudding will be 5 years old soon. When your child has additional needs, birthdays can sometimes be a stark reminder of milestones missed. This year though, it’s a new challenge that is facing me. The birthday party! Last year he had only just had an operation […]

Clearing out

Ah, the post-Christmas clear out! Finding space for all those new toys often means a ruthless look at the old ones and the filling up of various charity bags. Added to that, moving Pudding into his own room has given the perfect opportunity for some reorganisation and de-cluttering. Reaching under T’s bed to pull out […]