Nothing and everything

In the run-up to MPS Awareness Day on May 15th, the MPS Society is asking us all ‘What does MPS mean?’ Last year I already wrote a long (and emotional) post about what it means to me as a parent. Of course, most of this blog is from my perspective. I share what I’m going […]

What will you do?

One hundred years ago Charles A Hunter, a doctor working in Canada, first described the symptoms of Hunter Syndrome. In 2017, there are still children dying from this and other mucopolysaccharidosis conditions. That is why MPS Awareness Day on 15th May is just as relevant as ever. Every year we ask friends and family to […]

Learning

Not Pudding. Me. It may be a bit of a cliche but Pudding definitely teaches me things. He is so friendly with everyone he meets, welcoming them with an open heart and no judgement, despite often being on the receiving end of judgemental looks himself. To him, everyone is a potential playmate regardless of age, […]

Blank

It’s been a while…. I don’t know what to write. I feel…a bit blank. We’re in limbo land again. Waiting for news on a surgery date *. Waiting for news on the NICE/NHS England decision. And in the meantime, even in a world where I am used to seeing dead or dying children on my […]

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: […]