Wish us luck…

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!

Comments

  1. Ger

    This brings me back to our journey to England for the trial.
    I’m thinking of you all Sally. I know it’s a decision no parent should ever have to make…the amount of hope this drug brings is amazing..Pudding is going to be fine..I just know it.
    You are all so brave and the courage that it takes is something you find from somewhere ..
    I will be thinking of you and pudding …
    Be brave and strong ..Pudding has the chance at a better tomorrow …much much love xxx

  2. Joanna

    Sally and Pudding! We are all thinking of you today. Hope everything goes as planned. Much love, xxx

  3. Jasmin

    Wishing you all a calm and straightforward next few days. He will be just fine and you will too. The ward is fantastic, full of helpful and smiley faces. Gary will be there with Riley, unfortunately me and Jensen are in Birmingham for the day so have to miss another dose. Hopefully get to see you both in march for the next dose. Lots of love sent fingers crossed pudding responds aswell if not more than our dumpling ? x

  4. Annika

    I wish you all the luck in the world! My thoughts will be with you!

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