Kindness

So you may have gathered that the last few weeks haven’t been the easiest – sickness bugs, half term, surgery, virtual house arrest after surgery (and don’t even mention politics!). But I’ve been carried through by the kindness of … well, almost everyone. Of course, there will always be the exceptions, the ones who judge […]

Surgery

Surgery this evening. After finding out in March that the port that delivers Pudding’s trial medication to his brain is no longer working properly, he is having it replaced today. This morning I chased him and let him climb on my back ¬†and tickled him until we were both in helpless giggles, as I knew […]

Labels

I came to a realisation in the wee early hours this morning when Pudding was slumped next to me on the sofa snoring. (Yes, more vomiting. And yes, I’m fed up of the smell.) I was thinking about the fact that he has possibly acquired some different labels without us even being aware of it. […]

Ups and downs

It’s been a funny old week. Ups and downs. Tears (mine) and vomit (Pudding). Hopes raised and feelings of despair. Some weeks fly by with barely a worry, and other times even the littlest of things can trigger days of anxiety and low mood. I’ve said before that I hate it when Pudding is unwell. […]

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 […]