KidneyKid

My little boy has FSGS, a rare and devastating kidney disease, and it has had a massive impact on our lives:

kidney bean sculpture

Looks can be deceiving

From the outside, you might be hard-pushed to realise my son is ill. On the days when he is well he can pass for any healthy child. What you won’t see is him come home and collapse with exhaustion on the sofa after school. What you won’t see is him too sick to want to [...]

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Hospital, in two acts

It’s been a bit of a week here so I am revisiting this post which is quite timely. ******** There is a dichotomy to hospital visits when William is sick. There is the rising fever, the increasing lethargy or the developing complications, the few hours where I have an increasing sense of worry, developing into [...]

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Grateful for this

We’re back from the hospital, a routine appointment, always fun in half term when I have to drag all the children there with me. There’s something mesmerising about watching four children run in four different directions in a dangerous place, knowing you might as well do nothing so as not to show favouritism about one [...]

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Why I ask you to vaccinate your child

The side of vaccination you may not have thought about.

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Remission

We got lab results back today and my boy is officially in (medicated) remission! (If it seems like you have read this before, the last one didn’t last.) His blood results are looking fab. His albumin is still a bit low (although higher than it has ever been) and his cholesterol is still too high [...]

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The best news since this whole sorry time started

My son has been leaking protein into his urine, scarring his kidneys, for the last nine months and probably longer than that too. He has managed a couple of days at zero or trace now and again in the last two or three months but it never lasted and he had a miserable summer holiday [...]

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