"Absorbing, poignant story of a family’s emotional rollercoaster in the aftermath of participating in a risky medical trial."
This poignant page-turner switches between the four members of the Willows family - a sixty-something couple and their two daughters, one of whom, 38-year-old Take That fan Patience, has Rett syndrome, a progressive genetic neurodevelopmental disorder that almost exclusively affects females. While she can’t speak or move, Patience is incredibly perceptive. She takes everything in and knows everyone’s secrets. She’s wryly funny too, remarking to herself that, “I’m still lying here, like Miss Havisham’s mouldering wedding cake, at least ten years after I should have left.”
Former nurse Louise has devoted her life to Patience and understands her daughter better than anyone. Meanwhile, Patience’s 36-year-old sister Eliza is in denial about being dumped by her fiancé, while Dad Pete works overseas most of the time. Then comes a ray of hope, in Louise’s eyes at least. She takes on a job with a leading Rett syndrome consultant, essentially so Patience can be part of his potentially ground-breaking gene therapy trial. While Professor Larssen thinks the therapy could reverse the syndrome’s symptoms, Pete is vehemently against Patience’s participation - he thinks the risks are too great.
Despite the dangers, they go ahead, and the story accelerates to an emotional, edge-of-your-seat ending, underpinned by a fine exposition of how humans weather the worst of life’s storms to cope with the unexpected hands we are dealt.
|Primary Genre||Modern and Contemporary Fiction|