I really enjoyed this story. As an expat, I easily related to the father who had to work far away from his family. I found the voice of the disabled daughter to be incredibly genuine and it was easy to connected with feelings of the “typical” daughter. Mostly, I resonated with the mom. I wished that she were my neighbor and I could invite her in for some tea and give her a place to breathe.

I received a digital ARC from the publisher through Netgalley in exchange for an honest review. An interesting book about a family living life with a non-verbal disabled adult and whether if you had the chance if you would change it. The humour from Patience’s internal monologue is funny and touching and the family divide caused by the trial is well written. An enjoyable book - loved the ending.

A thought provoking book about family dynamics and living life with a disability and whether if you had the chance if you would change it.
In the book Patience is living with Rett's syndrome and we get to hear Patience's internal monologue and her thoughts and feelings. When the opportunity comes for Patience to be part of the first ever clinical trial for humans with Rett's it creates an ethical divide within her family and makes you question who actually knows what is best for a non-verbal person.
Although the book included some heavy topics it was a pleasant and enjoyable read.

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Patience by Victoria Scott.

This novel is a gem. The story by a first-time author, takes us into the world of Patience, a ‘Take That' superfan and profoundly-disabled young woman living with her family. An ordinary family living in the most challenging circumstances, as they struggle to give Patience the quality of life every parent wants for their daughter.

Imagine the elation when out of the blue comes the possibility of a cure. A cure for the condition which has robbed Patience of her ability to communicate or control her body in any way. But there are risks-some of which would make her situation worse.

The characters are completely convincing. I really became involved in their lives and dilemmas. I found I had to keep reading to find out what happened to them. They struggle through difficult decisions, seeking what's best for Patience; all driven by their love for her. There are no easy answers to the dilemmas facing this wonderful family and you are with them every step of the way as they stumble towards a resolution.

Meanwhile Mum, Dad, and sister Eliza each have their own emotional stories which unfold as the novel progresses. Hearing from each of the main characters as the story develops really helps you to understand and share in all their different points of view.

Above all, the character of Patience shines through as she watches the world and her family’s lives. Unable to communicate, she is forever an observer, understanding but unable to share in what's going on around her.

The novel revolves around some big issues but with a light touch-with humour, and empathy. The story is informed by the author's own experience which helps make it a vivid picture of a family which is both very ordinary and extraordinary.

By turns, heart-wrenching and uplifting, this novel and this family found a place in my heart and is thoroughly recommended.

I received an advance copy of, Patience, by Victoria Scott. This book is so good, it really makes you think. Patience has a disease, but she can be "normal" if she starts a new trial they are doing. Her family is divided, and Patience cannot speak for herself.

I was quite conflicted with this novel as I did find it held my attention throughout but I was a little uncomfortable with the subject matter. Patience is a 30 year old woman who has Rett's Syndrome. She is unable to speak or move unaided and requires 24 hour care. The book flips between how it affects her parents and sister as well as chapters from Patience's own point of view. This is what makes me a little uncomfortable. The author has a sibling with Rett's Syndrome and is making assumptions about what they would say- they're a burden, they're ugly and a whole host of other unpleasant remarks. The main plot of the book is that Patience's family choose to go for experimental drug treatment to try and reverse the condition. It's a very personal and sensitive subject but the lightness and rom-com vibe of the book doesn't sit well with the implications of the family assessing whether they think Patience's quality of life is enough.