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Wednesday, December 14, 2011

CF - How would you cope?

Imagine, if you will, the thought that everytime your child catches some sort of infection, it can be weakening his resistance and opening him up to something life threatening.  Every cold he catches is bringing him one step closer to what you know is the most likely outcome – early death.  Imagine knowing you are likely to outlive your own child and all you can do is watch.  Wouldn’t that be a living hell?  And yet thousands of parents live with that knowledge every day!

Up until about 6 years ago I had no idea what Cystic Fibrosis was.  I’d heard of it, but knew nothing of what it really meant.  I’m guessing that unless you’ve come across someone affected by CF, then you probably don’t either.

From when my youngest son Luc was just 8 weeks old, he suffered with asthma which was quite severe at times.  He had to have regular therapy sessions by a specialist physiotherapist to clear the mucus from his lungs.  We’d been living in France less than a year.   It’s very rural here and I had difficulties sourcing a specialist in the area and was finding the 3 hour often daily round trip to Toulouse impossible.  I put an ad on an English Forum on the internet in our area and had a response from S who recommended a Physiotherapist about 20 minutes from home.  You could say S is an expert on the subject of Physiotherapists as her son has CF and spends much of his time there.  It was the first time I’d encountered a CF sufferer and I was surprised at how her son looked like any other normal, healthy 3 year old, but this couldn’t be further from the truth.