We had our first visit to Manchester yesterday and it was a long tiring day (taking Pudding on the train was always going to be a challenge!). The consultant there, Dr Simon Jones, took great care to explain really clearly what MPS is all about – not much I didn’t know but useful to hear it again, and great for Hubby. He was also very honest about how little they can say for certain. We may find out what sort of severity to expect once DNA tests are done, or we may not. Jane, the specialist nurse was there too, and also another nurse who played with Pudding and kept him happy, sometimes out of the consulting room. This meant that we were free to concentrate a bit more on what was being said, and also felt so wonderful having someone else take him away even for just that half hour. All the staff we met were fantastic, so friendly and warm, and with loads of experience of this ultra-rare condition. We will be seeing a lot of them so it’s good to know we’re in safe hands.
It was a bit of a shock to find out we’re starting ERT next week, and the logisitics of sorting out the weekly drive, childcare, and so on are a bit daunting. But of course, it’s a huge positive that something is being done. As for eventual prognosis we just have to continue waiting and hoping.
I’ve been continuing the process of drip-feeding information to Twiglet. At the weekend, I was flicking through the MPS Society magazine and he shouted out ‘There’s a picture of Pudding in there!’ – even he can spot the typical MPS look! He is of course entirely unaware of the wider implications of the condition, which is just as it should be.
Niece, being older and naturally empathic, has more worries. On the school run today she asked how the visit to Manchester went, and then whether Pudding would ever learn to talk properly, to which I replied honestly that we just don’t know. Then she hit me with the most difficult question – ‘Are you concerned?’ Of course, my honest answer would be, ‘Yes, I’m terrifed about what the future will bring,’ but that’s not something I could say to her. I hedged it instead with ‘I would certainly rather he didn’t have this condition – all I’d want for any of you is to be happy and healthy.’