chronic kidney disease

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

Weight gain

As part of this condition, my little son, my little five year old skinny boy, put on a quarter of his weight in fluid over the space of a few days in January. A quarter. This is how his feet normally look: This was him the day before he was admitted to hospital when I [...]

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February 20th

Everyone has days in their life that they will remember with startling, painful clarity. For us, that day was February 20th. Until that date we were having a pretty wonderful few months. The boys were thriving -  all of them (if you don’t count William’s episode of Nephrotic Syndrome after the New Year). Harry was [...]

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When the future won’t be quite what you hoped it would be

I want to write about something else. I want to write about, think about, something other than my son having FSGS. But I can’t. It’s like a sort of grieving process. The first two weeks after he was diagnosed, Matthew and I were a mess. There was not simply the shock of being given such [...]

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A little background on FSGS

FSGS is a rare kidney disease. It is a condition for which there is no proven treatment. Despite the use of cytotoxic agents, steroids, immunosuppressants and plasma exchange, approximately 50% of those who do not respond to medication progress to renal failure, half within 2 years and the majority within 5 years. Many sufferers will [...]

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Questions no parent should have to ask

“Will my son live to 20? 40?” I ask our nephrologist who just a couple of hours earlier had given us the diagnosis that we had been dreading most: FSGS. He shrugs his shoulders. “None of us knows whether or not we will get run over by a bus tomorrow,” he says dismissively, a flicker [...]

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