Thursday, 12 August 2021

Patience - Victoria Scott

If you were offered a chance to cure your child's disease, would you take it?

The Willow family have been through a lot together. Louise has devoted her life to her family and raising her disabled daughter, Patience. Pete now works abroad, determined to provide more, even if it means seeing less of those he loves. And Eliza, in the shadow of her sister, has a 'perfect' life in London, striving to live up to her mother's high standards.

Meanwhile, Patience lives her life quietly, watching and judging the world while she's trapped in her own body. She laughs, she cries, she knows what she wants, but she can't ever communicate this to those who make the decisions for her. Patience only wants a voice, but this is impossible.

When the opportunity to put Patience into a new gene therapy trial to cure her Rett syndrome becomes available, opinions are divided. The stakes are high, and the Willow family face an almost impossible dilemma.

And what is a 'normal life,' anyway? Is Patience about to find out...?


Available to purchase - HERE

Incredible.

What a wonderful debut from Victoria Scott, it blew me away. We are taken into the world of Patience, a young lady with Rett Syndrome who needs 24-hour care, having a caring, compassionate family and support network. This normal, run of the mill family face some of the most difficult challenges in caring for Patience and eventually realise they are struggling to give her the quality of life needed. An opportunity presents itself that tears the family apart, each wanting what is best for Patience but each seeing things from a different point of view.

A chance of a cure via gene therapy seems like a miracle and Patience’s’ Mum is passionate that this is what they’ve been waiting for; her dad however questions if the risks are worth it; he is sure Patience is happy and they are managing.

What a challenging, heart-breaking decision to make. The characters were all so engaging, especially as we knew the inner thoughts of Patience and had that special unique insight her parents etc didn’t. Each character has their own struggles on top of caring for Patience, that adds extra pressures to their lives but also extra complexities to this story.

This book is at times heart breaking but thought provoking, it provides an honest insight into those living with severe disabilities and those who provide their care whilst challenging the perception of what a “good life” may be.

There are moments of light, laughter, and lots of love of all kinds. Victoria Scott has written this with intimate knowledge of living alongside this condition and I know it will provide education for others, like me, who knew very little of this syndrome. Her writing has compassion, heart and humour and it captured my attention from the first page.

I cannot recommend this book highly enough.


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