So, I haven’t written much lately.
The reason? I’ve spent much of the last three weeks feeling angry and disappointed and downright scared about the future. Bear with me – I’m not wanting to be contentious here.
I believed very strongly that we would be better off staying in the EU. I recognise that many people also had valid reasons for believing the opposite, and I don’t think this is the place to argue about those reasons. However, by avoiding writing about it, I’ve tied myself up in knots thinking about it instead. This blog has been where I’ve vented and sorted through my thoughts for the last year, and although this vote seems unrelated to our journey through the trials of MPS, for me it’s not.
The truth is, we’re reasonably well-off and Hubby is in a good job which is unlikely to be affected by all this turmoil. If it wasn’t for Pudding, I probably would be able to set aside my worries and just move on.
We’ve been told that there is bound to be some economic uncertainty for a while but that we’ll be better off in the long run. But I think the vote couldn’t have come at a worse time just as we are (very slowly) recovering from the global economic downturn. If the last six years are anything to go by it is those on the margins of society that will suffer the most. And that includes the disabled population of this country.
Earlier this year the government had to back down on cuts to disability benefits, and this was hailed as a success. Yet the news from those who are continuing to fight for these payments is still worrying. I fear what further cuts are coming, whether directly or by the back door. And I fear that we have a government in place that cares little for the human rights of those affected.
Mainly though, I worry about the NHS. It’s clear that there won’t be a massive injection of cash in the years to come. Will there be less funding? And more pressure on staffing levels? And where does that leave us? Pudding already receives one of the most expensive drugs in the world every week as his enzyme replacement therapy. The trial drug that he is currently on is likely to have just as jaw-dropping a price. Even if it is proved to be a success, a health service strapped for cash could easily decide not to fund it. I understand that difficult decisions will always have to be made, but this is my precious son.
When we first heard the news that Pudding had the severe form of Hunter syndrome we were devastated that he would not live beyond his teenage years. For a while we couldn’t even imagine the possibility that he might still have a future. The clinical trial has given us hope again, and I don’t want that hope to be taken away.
This is a situation where I would truly love to be proved wrong.