Pudding* is four. He was diagnosed with MPS II on July 1st 2015, after a history of development delay, particularly language. He loves eating, football, running in the opposite direction to everyone else, and watching ‘Sarah and Duck’ on TV.
Big brother, Twiglet*, is six and in Year 1 at school. This is not a good thing, as they are only allowed to play outside at break time, and have to spend time doing actual learning. He loves playing with Lego and superheroes. Even better is playing with Lego superheroes.
Hubby works in a computer software company, and in the evenings winds down by drawing. He is currently plugging away at a graphic novel idea that has been germinating for a while.
As for me, I’m a stay at home mum. In previous lives I have worked for Oxfam, and then as a complementary therapist. I look after Niece (9) and Nephew (7) on a regular basis and, when not surrounded by children, am working on a novel. When we first heard about MPS I started writing a diary about it, needing an outlet for all these conflicting emotions – I’ve now turned it into a blog so that friends and family can keep up with our latest news. It’s also the sort of thing that I wanted to read in those scary early days – knowing that other people felt the same sort of turmoil – so although this blog is very much our personal story, hopefully it may help another newly diagnosed family in the future.
* These were the nicknames I used for each of them when pregnant, and they still feel appropriate now – Twiglet being skinny and Pudding much rounder!