It was a simple thing. Another blood test, some more investigations into whatever flawed gene or missing protein might be the cause of my daughter's troubled life, with her terrible seizures, her blindness, her inability to walk or talk or eat unaided. Over the past 15 years, there have been many such attempts to identify her condition.
One year later, we asked the doctor, a top geneticist at one of the world's most famous hospitals, what had happened to the results. His office told us a rambling story about financial restrictions and the need to send such tests to a laboratory in Germany. They said there was little he could do but promised to pursue our case.
It was a bare-faced lie. The precious vial of blood had been dumped in storage and forgotten. The following day it was despatched to a laboratory in Wales and 40 days later the specialists came up trumps. They identified her condition, an obscure genetic mutation called CDKL5.
The breakthrough was rather mind-blowing, giving us some peace of mind and the chance to talk to families of the hundred or so other children worldwide identified with the condition. It was also life-changing, since it means our other child and close relatives are in no danger of passing on the condition. Indeed, had we known sooner we might have even tried for more children.
But the most shocking thing was not the lying. Nor even the incompetence. It was our total lack of surprise at the turn of events, since after 15 years suffering from the failings of the National Health Service we are prepared for almost any ineptitude.
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