NHS SOS

On the way to gym club today we passed the hospital as usual. But unlike usual I was beeping my horn in support of the junior doctors standing there in the hail, on strike. I don’t usually talk about political issues on here – that’s not the reason I started blogging and I’ve seen too […]

Meanings

I was reading a book (yes, fiction, I was actually reading fiction) yesterday evening. I reached the end of a chapter, turned to the next one and the chapter heading stopped my breath for a moment. It said simply ‘Hunter’. Certain words have been changed so much for me since Pudding’s diagnosis. When I see […]

Communication (part 1)

Statement 1 – ‘Well, actually, if you had a time machine you still couldn’t travel to the past or the future, because it would still be the present for you.’ Statement 2 – ‘You don’t care if he hits me!’ Sometimes I find it hard to believe that the six-year-old boy who can use the […]

EHCP

I’ve complained about paperwork before – the reams and reams of forms and admin that take up so much of the day as a special needs mother. But it does often serve a very useful purpose. The latest being one which will have a big impact on Pudding’s future over the next few years; the […]

Beautiful words

Tonight I found some of the most beautiful words I have ever read and I want to share them with you. Are you ready? Well, here goes: “RGX-121 is REGENXBIO Inc.’s product candidate for the treatment of Mucopolysaccharidosis Type II (MPS II), also known as Hunter syndrome. Individuals with MPS II have a deficiency in […]

I hate MPS

Have I ever said? I loathe MPS with a passion. I loathe it with every millimetre of my body, every breath, every beat of my heart. I loathe it and yet am powerless to do anything about it. If it was a person I could tell them how much I hate them (though I probably […]

A request

I’ve realised the major problem with blogging as an introvert is that it’s easy enough to write the posts, but I’m absolutely hopeless at promoting them. When Pudding was first diagnosed, I searched the internet night after night, and in the early mornings when I found it impossible to sleep. I was desperate to find […]

Something different

Something more unusual today: two different creations both designed to raise a little more awareness of MPS in the wider world. Firstly, Melissa Hogan, the mother of another boy with Hunter Syndrome has co-written a song that perfectly describes what our lives are like. The song called ‘Alive’ has reached the final of an international […]