It’s been a while….
I don’t know what to write. I feel…a bit blank.
We’re in limbo land again. Waiting for news on a surgery date *. Waiting for news on the NICE/NHS England decision.
And in the meantime, even in a world where I am used to seeing dead or dying children on my Facebook feed, it has been an out of the ordinary week. Seven MPS children have passed away in one week. Seven families are now looking at an empty space where their beloved child was.
I didn’t know any of the families personally – most were living with MPS III, so I didn’t have as much contact with them – yet I have seen photos of some since my early days on the Facebook group. Each death hits our community hard and they will be mourned around the world.
There are still families fighting on though. Families who need the hope of a cure and the knowledge that future treatments will help their precious children.
The government’s own Rare Disease Strategy, published in 2013 states it should “ensure no one gets left behind just because they have a rare disease”. This is one thing I believe they could get right. If you haven’t already, please consider signing this petition to help it happen.
* We did get some slightly better news about Pudding’s clinical trial. Last week I was concerned that we had had ten months of wasted blood tests, hospital trips, and so on. Ten months of normal life being interrupted by medical stuff that we have forced him to submit to. However, having checked his CT scans the neurosurgeon confirms that although the portacath is now in the wrong place he believes that Pudding will still have been receiving at least some of the dose in a roundabout way. He won’t be given another dose though until the portacath has been revised.