How long?

How long do we have?

It’s an inevitable question once your child is diagnosed with a life-limiting condition. It’s a question I’ve asked our consultant and one that others have asked me.

How long do we have?

How long before we know for certain? How long before we will see the benefits of treatment? How long before he loses his speech? How long before he can no longer walk? How long before he needs peg feeding? How long before it becomes too much for his heart and airways? How long do we have? How long? How long…

The answer to the ultimate ‘how long’ is elastic. It was cut brutally short at diagnosis but stretched again when enzyme treatment started. When it was confirmed that Pudding had the worst possible outcome (a complete gene deletion) that elastic contracted again. And then it eased out again once he got onto the clinical trial.

Our boys all seem to react to Hunter Syndrome so differently – some are plagued with chest infections, ear infections, hernia and so on from the get go. Others like Pudding seem to escape much of the bodily effects and present mostly with development delay. So when it comes to asking ‘how long’, there is no easy answer that the doctors can give.

But now having stopped the trial and no longer having treatment, we’re back to that pitifully short length of elastic that we were left with when we first had his diagnosis confirmed.

How long do we have before he will no longer reach out to hold my hand? How long before that infectious and increasingly rare smile disappears for ever? How long will I still be able to hold his solid little body to mine? How long before I plan a funeral? How long…

One of the hardest things I’ve ever had to do on this MPS journey was just before the final diagnosis. Hubby (who I’d kept in the dark about all my late night googling) suddenly asked me, ‘So what’s the worst case scenario?’ and I had to tell him that we might lose our little curly-haired livewire as early as ten years old. That’s not likely to be the case now. At least I hope not: he’s already nine and a half. Most estimates of life expectancy before enzyme treatment became the norm were around 14 years.

And yet, I continue to count our blessings. It may seem strange, this insistence of mine on our good fortune, but compared to some other families I know of, we are lucky. Although Pudding is declining, although his condition is life-limiting, we are not yet in the life-threatening stage. I don’t go to sleep worrying that I’ll lose my child to a seizure in the night, or have another acute illness hanging over us.

How long do we have? It could still be years. It could be quicker than we expect.

Maybe some day we will be sat in another clinical room and the consultant will shake his head and say, ‘I’m sorry, you only have…’ Maybe if I had a crystal ball I could check and see how long that will be.

But when it comes down to it, I’m not sure I want to know.

2 thoughts on “How long?

  1. Kevin Willetts

    Thankyou for sharing your thoughts. As with Pudding, our boy Rupert has Hunters with complete gene deletion and will be 7 next week. We are also very lucky to enjoy every single waking moment with him and he is such a joy to be with.

    Like

    1. huntersmum

      Rupert is such a cutie! And although he has many similarities with Pudding he’s one of the boys I was thinking of when I wrote about how different they all are – even with the same deletion.

      Like

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