So this is it. We’re heading off to Manchester again later today.
This could be the first week of the rest of Pudding’s life. The first dose of a monthly enzyme that could potentially halt the progress of this horrible disease.
We’ve known about this trial ever since we first sat down to talk with the specialist consultant back in July. At that point we hoped to goodness that we would never need to learn any more about it, but of course that wasn’t to be.
Once it was confirmed that Pudding has the most severe form of Hunter Syndrome, we had to face it. Clinical trials of course have an element of risk. There was very sad news lately of a trial for Duchenne muscular dystrophy being suspended due to the death of one of the participants. A different drug and a different disease, and the death may not have been caused by the trial drug itself, but it’s enough to make anyone stop and think again.
Although other boys have been on the Hunters trial safely for a few years now, the numbers are still small. Could it be our son who reacts badly?
It’s a risk worth taking though; the one thing I couldn’t bear would be to look back in ten years time and think, ‘We had a chance, but we didn’t take it’.
So here we are, taking that chance. The dose will be given on Tuesday morning, but because of all the tests afterwards we don’t get to leave until first thing Thursday. Technology not always being my friend, I may not get a chance to update you until then.
For now, wish us luck!