A Girl Called Patience
by Victoria Scott
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Pub Date 05 Aug 2021 | Archive Date 31 Dec 2022
Aria & Aries, Head of Zeus
A gripping and thought provoking story about family bonds and finding hope in unexpected places, for readers of Kate Hewitt and Imogen Clark.
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?
Available on NetGalley
Average rating from 2 members
I will not soon forget Patience nor her family!
I enjoyed this novel.
It is a heartfelt, heartbreaking journey of a family with many troubles.
The center of this group; is a young woman named Patience.
Patience is a non-verbal, non-ambulatory, daughter and sister with a diagnosis of Rett's syndrome. Rett's syndrome is a genetic mutation that is primarily found in females. It causes brain deterioration at a very young age.
Her Mum, Louise is the primary care-giver for Patience.
Her very best friend, is her older sister, Eliza who tells Patience all her life secrets. So very many secrets!
There is tension, fear and drama as this unit try to survive each day and dilemma.
When an experimental gene therapy trial is offered to possibly help with Rett's, there are many decisions to make.
It is safe? What are the side effects? Can it be a cure or a hindrance and will it tear the family apart?
I have a friend who has a daughter with this dreaded syndrome and it is tough.
It tortures the family and can and often does tear them apart.
This book was well done and very detailed and I could totally relate to the story.
Thank you to #NetGalley and to#Aria & Aries for this ARC and allowing me to read and to provide my own review.