It’s a strange place we find ourselves at the moment.
Pudding has a serious genetic condition – those with the severe version of MPS II (Hunter Syndrome) are not expected to live beyond their teenage years – yet he is not actually ill.
Last summer when it seemed like there was never-ending roadworks going on outside our house, one of the workmen knocked on the door to apologise, saying ‘I understand you have a sick child at home’. I was livid. Not with him. But with the person that had used my child to justify their own complaints about the noise. I realise now that I was also reacting against this definition of Pudding as ‘a sick child’.
Yes, we have all the hospital trips and treatments and other appointments. Yes, there are slight issues at the moment with his airways, joints, heart and so on. But he can still run, eat, communicate in his own way and carry on a vaguely normal life. Any stranger watching him shriek his way around the playground would see a boy who has his differences but to all intents and purposes looks healthy.
Unlike those with more advanced MPS, he is not needing a wheelchair full-time or feeding tube. I know we’re lucky that we don’t have to go there yet.
A few people have asked me lately how the trial is going; is it working? The simple answer is we won’t know for a while. Pudding has impressed us with a few things in recent weeks, enough to give me some small hope that it may be making a difference. But the normal course of severe Hunters is for children to continue developing until the age of 4 or 5 (he was 4 in February) before reaching a plateau and then starting to lose skills. Therefore it is impossible to put progress down to any particular factor right now.
So for now, we wait.
This no-man’s land is home for the foreseeable future, so I’m settling in for a long stay. There are certainly worse places to be.