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...?
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.
