Summary
It's only 11.30 but my doorbell has just rung for the sixth time this morning. It's not that I'm super-popular or anything; the vast majority of visitors to my home aren't even coming to see me. No, it's my youngest child, Felix, seven, who is the subject of all this attention. I try to think back to what privacy was like and realise that I can't remember.
Felix is disabled; he has a condition called nemaline myopathy (NM), a rare muscle disorder that makes him profoundly weak.See the full content of this document
Extract
This Life
Though his mind is razor-sharp, his body is hopelessly inefficient.
He uses a power wheelchair to get around, a ventilator to breathe and a whole host of other machines and equipment to lift, fee...See the full content of this document
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