Will my Disabled Daughter have a Place in this Genetic Wonderland?

I can still remember each second of that day just before Christmas when everything changed. The happy family lunch, then the seizure suffered by my tiny new daughter, her eyes rolling and little limbs flailing. The nice paediatrician telling us gently she had “profound brain damage”, then carrying her with tears in my eyes through crowds of festive shoppers.

The next months and years are harder to recall, a blur of dark times later identified as the mourning period that parents in such cases endure. There were batteries of tests, endless scans, the same ceaseless questions as she was prodded, probed and wired up to weird machines. But there were none of the expected signs of brain damage, nor any clues over her condition from the doctors searching for a diagnosis.

One supposed expert measured our heads before declaring breezily that our daughter – then suffering up to 30 seizures a day – would have only minor impairments to her IQ. Others were more realistic, offering gloomier prognoses as it became apparent she would never walk, talk or feed herself...