"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 |
| Other Genres: | |
| Recommendations: |
If you were offered a chance to cure your child's disease, would you take it?
The Willows have been through a lot. Louise has devoted her life to caring for her disabled youngest daughter. Pete works abroad, almost never seeing his loved ones. And their eldest, Eliza, is burdened by all the secrets she's trying to keep from her overloaded family.
Meanwhile, Patience observes the world while trapped in her own body. She laughs, she cries, she has opinions and knows what she wants. But those who love her most - and make every decision about her life - will never know.
Or will they? When the Willows are offered the opportunity for Patience to take part in a new gene therapy trial to cure her Rett syndrome, they face an impossible dilemma. Are the very real risks worth the chance of the reward, no matter how small?
Patience features in the following genres: Modern and Contemporary Fiction, Contemporary lifestyle fiction, General Fiction, Fiction, Family Drama, Book Club Recommendations, Debut Books of the Month, Recommendations
Patience is available in Paperback, Hardback
Patience was written by Victoria Scott and published by Head of Zeus