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Patience
The story of Patience, a severely disabled young woman, and her family's decision to enter her into a pioneering but risky gene therapy trial.
Booksellers Association Book of the Month
A LoveReading Debut of the Month and Book Club Recommendation
A new high-risk treatment gives you the chance to cure your child's disease. Do 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?
'A thought-provoking, compelling and entertaining read. I could barely put the book down until its equally heart-wrenching and heart-warming ending. A wonderful, smart and funny book' - Louise Fein, bestselling author of People Like Us
'Inspired by truth, Patience and her family come alive on the pages. I felt every single emotion with them' - Alice Peterson, author of Monday to Friday Man
'An eye-opening and heartwarming tale' - Woman's Own
'An extraordinary novel about love and hope and family and what happens in the space between the words. I adored it' - Kirsten Hesketh, author of Another Us
'A poignant page-turner' - LoveReading
Booksellers Association Book of the Month
A LoveReading Debut of the Month and Book Club Recommendation
A new high-risk treatment gives you the chance to cure your child's disease. Do 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?
'A thought-provoking, compelling and entertaining read. I could barely put the book down until its equally heart-wrenching and heart-warming ending. A wonderful, smart and funny book' - Louise Fein, bestselling author of People Like Us
'Inspired by truth, Patience and her family come alive on the pages. I felt every single emotion with them' - Alice Peterson, author of Monday to Friday Man
'An eye-opening and heartwarming tale' - Woman's Own
'An extraordinary novel about love and hope and family and what happens in the space between the words. I adored it' - Kirsten Hesketh, author of Another Us
'A poignant page-turner' - LoveReading
394 pages, Kindle Edition
Published August 5, 2021
About the author
Victoria Scott
9 books159 followersVictoria Scott is a bestselling British author of life-affirming fiction, known for her gripping gothic historical mysteries and uplifting book club novels that explore themes of hope, resilience and the power of human friendship and love. Her books are perfect for fans of Lucinda Riley, Kate Morton, and Jojo Moyes.
Her novels, The Storyteller’s Daughter and The Women Who Wouldn’t Leave, are both Amazon Top 100 bestsellers. Her latest novel, The House on the Cliff – a haunting, atmospheric tale of secrets and second chances – is out now.
Before becoming a novelist, Victoria worked as a journalist for the BBC, The Telegraph and Al Jazeera. She now combines her love of storytelling with lecturing in journalism at Kingston University.
Victoria lives on an island in the River Thames with her husband, two children, and a cat called Alice. When she’s not writing, she is a keen (but amateur) singer and gardener.
Follow Victoria for updates and behind-the-scenes book content:
Instagram & TikTok: @VictoriaScottAuthor
Facebook: @VictoriaScottJournalist
X/Twitter: @toryscott
Her novels, The Storyteller’s Daughter and The Women Who Wouldn’t Leave, are both Amazon Top 100 bestsellers. Her latest novel, The House on the Cliff – a haunting, atmospheric tale of secrets and second chances – is out now.
Before becoming a novelist, Victoria worked as a journalist for the BBC, The Telegraph and Al Jazeera. She now combines her love of storytelling with lecturing in journalism at Kingston University.
Victoria lives on an island in the River Thames with her husband, two children, and a cat called Alice. When she’s not writing, she is a keen (but amateur) singer and gardener.
Follow Victoria for updates and behind-the-scenes book content:
Instagram & TikTok: @VictoriaScottAuthor
Facebook: @VictoriaScottJournalist
X/Twitter: @toryscott
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Displaying 1 - 30 of 77 reviews
August 11, 2021
Book Reviewed on www.whisperingstories.com
Patience is a book that will question your ethics and your desire to help a loved one. Out title character, Patience is a young woman in her thirties who has Rett syndrome. She can’t speak, she is confined to a wheelchair and needs constant care and help.
Her mother, who is an ex-nurse, applies for a job working for a doctor who is testing gene therapy to cure the disease. She is offered the job and offered the chance to have her daughter take part in the trials which haven’t been tested on humans but have seen positive results in animals.
This is a book that was very close to reality for me. Without trying to make this review about me, my youngest son has a rare, genetic, incurable illness and around two years ago we (his father and I) were asked about him taking part in a new treatment that could cure him, though it came with lots of risks – including death. My son although gets sick a lot and will have to have medication for the rest of his life leads a normal-ish life, so we refused. I’m not sure had his illness been as severe as Patience’s if I could have refused, just like her mother.
It is a very touching and poignant book that hits you straight in the heart. I love that the book is told from various points of view including Patience herself who is really funny and is a very big Take That fan.
Victoria Scott is an author who has certainly done lots of revision on Rett syndrome, I presume she has some personal connection to the disease given how well she understands it. It also felt like she managed to get inside the heads of the various characters perfectly and their lives and experiences certainly felt authentic.
Patience is a book that is not only thought-provoking, engrossing, engaging, and heart-warming, it is also a book that makes you feel happy and content throughout. Seeing the world from Patience’s point of view really opens your eyes to not only how disabled people are treated but how they view the world around them and appreciated even the smallest things in life.
Patience is a book that will question your ethics and your desire to help a loved one. Out title character, Patience is a young woman in her thirties who has Rett syndrome. She can’t speak, she is confined to a wheelchair and needs constant care and help.
Her mother, who is an ex-nurse, applies for a job working for a doctor who is testing gene therapy to cure the disease. She is offered the job and offered the chance to have her daughter take part in the trials which haven’t been tested on humans but have seen positive results in animals.
This is a book that was very close to reality for me. Without trying to make this review about me, my youngest son has a rare, genetic, incurable illness and around two years ago we (his father and I) were asked about him taking part in a new treatment that could cure him, though it came with lots of risks – including death. My son although gets sick a lot and will have to have medication for the rest of his life leads a normal-ish life, so we refused. I’m not sure had his illness been as severe as Patience’s if I could have refused, just like her mother.
It is a very touching and poignant book that hits you straight in the heart. I love that the book is told from various points of view including Patience herself who is really funny and is a very big Take That fan.
Victoria Scott is an author who has certainly done lots of revision on Rett syndrome, I presume she has some personal connection to the disease given how well she understands it. It also felt like she managed to get inside the heads of the various characters perfectly and their lives and experiences certainly felt authentic.
Patience is a book that is not only thought-provoking, engrossing, engaging, and heart-warming, it is also a book that makes you feel happy and content throughout. Seeing the world from Patience’s point of view really opens your eyes to not only how disabled people are treated but how they view the world around them and appreciated even the smallest things in life.
December 3, 2021
Okay, heads up. I am a huge Take That fan, and I have cerebral palsy. So this book sounded perfect for me!
I loved it, the different perspectives of the various family members really helped me gain an understanding of Patience and the impact of her condition on her relatives.
I had not heard of Rett's Syndrome before reading this book, and upon it's introduction, I immediately looked it up online. The premise of the story centres around Patience, and the dispute about her care among her family. Her chapters are heartfelt, traumatic and so moving to read. She is unable to communicate her needs and feelings to those around her, and I admit this was agony for the reader to share the pain with her whilst others decided her fate.
The personality of Patience shines through, as does her love of Take That. I do wish there were more references to the band though, I can't lie! I felt for Patience as she is put through repeats of the Progress Tour DVD, that's my least favourite tour!
On a serious note, Scott deals with the subject matter beautifully, weaving a little humour to lighten the intensity throughout.
I loved this, and Patience will stay with me for a while yet. Wonderful.
I loved it, the different perspectives of the various family members really helped me gain an understanding of Patience and the impact of her condition on her relatives.
I had not heard of Rett's Syndrome before reading this book, and upon it's introduction, I immediately looked it up online. The premise of the story centres around Patience, and the dispute about her care among her family. Her chapters are heartfelt, traumatic and so moving to read. She is unable to communicate her needs and feelings to those around her, and I admit this was agony for the reader to share the pain with her whilst others decided her fate.
The personality of Patience shines through, as does her love of Take That. I do wish there were more references to the band though, I can't lie! I felt for Patience as she is put through repeats of the Progress Tour DVD, that's my least favourite tour!
On a serious note, Scott deals with the subject matter beautifully, weaving a little humour to lighten the intensity throughout.
I loved this, and Patience will stay with me for a while yet. Wonderful.
April 21, 2021
Patience is many things: a HUGE fan of Take That, a person with long blonde hair that many people envy. She's direct, funny observant and a sister and daughter.
Patience also has Rett Syndrome. She is dependent on carers and family in every aspect of her life. Unable to communicate verbally, she gets her feelings, wants and needs across.
Patience by Victoria Scott goes deep into the lives of Patience and her family and carers. She lives in a residential care home with others with disabilities.
As a person with Cerebral Palsy and Hydrocephalus who, like Patience, requires care and support in every aspect of my life, I was immediately able to identify with her. I cannot give an opinion on life in a care home, but can about the difficulties and challenges with finding care, support and services that meet my needs.
I identified with, and was glad that, author Victoria Scott included people with a variety of disabilities (Cerebral Palsy included) in the plot as this had me saying "yes, that's me!" and the succinct description was spot-on with the specific needs it mentioned.
Patience's parents are fighters, and there's a very real conflict between them about her needs and their ability to provide the best they can for her. She is at the forefront of their lives, as is her sister Eliza.
There's no jealousy or conflict between the sisters though, and they have a very good relationship which is tender and beautiful. One moment in particular is very raw when Eliza goes to Patience late at night.
Eliza has her own struggles, with life and love so it was great to see her "slice of life" too.
Their dad, Pete, was largely absent through work as he works in Qatar for the higher salary and his journey to get any type of job, even in construction, to help his family is really humbling. I longed for the moments when he came back. Even in absence, he's thinking of his family.
There are some real conflicts though between him and his wife due to the circumstances of their life.
What would you do if you had the chance to work with the doctor who wanted to do a medical trial that could improve the lives of many children and adults with Rett Syndrome? Patience's mum jumps at the chance but this creates conflict with her husband.
Her determination is heartwarming in a heartbreaking yet hopeful situation. Their pre-diagnosis journey was breathtaking and really made me stop and think. The place that had in the story was perfectly thought out.
There are parts that made me smile and others that made me identify so much with Patience's life. The mix of frustration, worry happiness and big dreams.
Patience is a heartwarming, raw emotional amazing portrait of a life some families could not have imagined, but that they embrace.
Patience and her family are people I just wanted to hug and who I would love to actually meet.
I have not come across many novels about life with disabilities, and they are something I have felt sorely lacking in the book market since I was young.
Patience is a real unforgettable treasure of a novel and I loved every page. Those who don't have insight into what it is to have complex needs and use a wheelchair like Patience and like me and so many others with disabilities soon will after finishing this.
I already knew about Rett Syndrome before I found this book but I found myself on YouTube wanting to know more. It's a very current novel as the medical trials are a real thing and that made it even more powerful for me.
Thanks to Victoria Scott and Aria for my ARC in exchange for an honest and voluntary review.
5 sparkling stars.
One of, if not my favourite books of the year. I congratulate Victoria Scott hugely for writing a novel that is so immersive and real about disability and the fears, hopes and struggles that those of us who have severe disabilities face. I hope it goes a long way in the never-ending fight to change societal attitudes.
Patience is a novel everyone should read. It's raw and emotional, but also an enlightening pick-me-up.
If you, or someone you know has disabilities and has ever felt alone, you are not with this book.
It's like a huge comforting hug that says "welcome to my world and I understand you."
I would LOVE this to be made into a film, I think it would be amazing. The book has also left me rooting for the trials for Rett Syndrome, but it also brings home the importance of accepting people just as they are.
There are so many life lessons in this novel, and I felt as if I were living the family's experience.
If I could recommend a novel to the people who made my life difficult as they did not understand what I live through, Patience would definitely be it. Even though I don't have Rett Syndrome, my challenges are similar to Patience's in terms of mobility and care.
The novel makes me feel extra happy for what I can do, even thought it's in a different way to others.
I think it will spark debate about care facilities and the role of family in care as well as shedding light on what people really live through.
Patience is not one to be pitied and I will never forget the day I discovered her and this book.
Patience also has Rett Syndrome. She is dependent on carers and family in every aspect of her life. Unable to communicate verbally, she gets her feelings, wants and needs across.
Patience by Victoria Scott goes deep into the lives of Patience and her family and carers. She lives in a residential care home with others with disabilities.
As a person with Cerebral Palsy and Hydrocephalus who, like Patience, requires care and support in every aspect of my life, I was immediately able to identify with her. I cannot give an opinion on life in a care home, but can about the difficulties and challenges with finding care, support and services that meet my needs.
I identified with, and was glad that, author Victoria Scott included people with a variety of disabilities (Cerebral Palsy included) in the plot as this had me saying "yes, that's me!" and the succinct description was spot-on with the specific needs it mentioned.
Patience's parents are fighters, and there's a very real conflict between them about her needs and their ability to provide the best they can for her. She is at the forefront of their lives, as is her sister Eliza.
There's no jealousy or conflict between the sisters though, and they have a very good relationship which is tender and beautiful. One moment in particular is very raw when Eliza goes to Patience late at night.
Eliza has her own struggles, with life and love so it was great to see her "slice of life" too.
Their dad, Pete, was largely absent through work as he works in Qatar for the higher salary and his journey to get any type of job, even in construction, to help his family is really humbling. I longed for the moments when he came back. Even in absence, he's thinking of his family.
There are some real conflicts though between him and his wife due to the circumstances of their life.
What would you do if you had the chance to work with the doctor who wanted to do a medical trial that could improve the lives of many children and adults with Rett Syndrome? Patience's mum jumps at the chance but this creates conflict with her husband.
Her determination is heartwarming in a heartbreaking yet hopeful situation. Their pre-diagnosis journey was breathtaking and really made me stop and think. The place that had in the story was perfectly thought out.
There are parts that made me smile and others that made me identify so much with Patience's life. The mix of frustration, worry happiness and big dreams.
Patience is a heartwarming, raw emotional amazing portrait of a life some families could not have imagined, but that they embrace.
Patience and her family are people I just wanted to hug and who I would love to actually meet.
I have not come across many novels about life with disabilities, and they are something I have felt sorely lacking in the book market since I was young.
Patience is a real unforgettable treasure of a novel and I loved every page. Those who don't have insight into what it is to have complex needs and use a wheelchair like Patience and like me and so many others with disabilities soon will after finishing this.
I already knew about Rett Syndrome before I found this book but I found myself on YouTube wanting to know more. It's a very current novel as the medical trials are a real thing and that made it even more powerful for me.
Thanks to Victoria Scott and Aria for my ARC in exchange for an honest and voluntary review.
5 sparkling stars.
One of, if not my favourite books of the year. I congratulate Victoria Scott hugely for writing a novel that is so immersive and real about disability and the fears, hopes and struggles that those of us who have severe disabilities face. I hope it goes a long way in the never-ending fight to change societal attitudes.
Patience is a novel everyone should read. It's raw and emotional, but also an enlightening pick-me-up.
If you, or someone you know has disabilities and has ever felt alone, you are not with this book.
It's like a huge comforting hug that says "welcome to my world and I understand you."
I would LOVE this to be made into a film, I think it would be amazing. The book has also left me rooting for the trials for Rett Syndrome, but it also brings home the importance of accepting people just as they are.
There are so many life lessons in this novel, and I felt as if I were living the family's experience.
If I could recommend a novel to the people who made my life difficult as they did not understand what I live through, Patience would definitely be it. Even though I don't have Rett Syndrome, my challenges are similar to Patience's in terms of mobility and care.
The novel makes me feel extra happy for what I can do, even thought it's in a different way to others.
I think it will spark debate about care facilities and the role of family in care as well as shedding light on what people really live through.
Patience is not one to be pitied and I will never forget the day I discovered her and this book.
March 22, 2021
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.
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.
August 5, 2021
What an amazing read!
No, seriously, I haven't felt gushy about a book for a while, now, and this one, well, it gave me the feels.
Now, it's not a rom-com, as I usually enjoy, but the story of Patience, a woman diagnosed with Rett Syndrome in childhood, captivate me.
I enjoyed how the book was written, with Patience's point of view given through her thoughts, since, she is unable to talk, and the differing viewpoints of her family: both parents and her sister, Eliza.
Life can't be easy as a carer, and member of family of an individual who is diagnosed with such a disorder. You often find the world sympathising with them, but this also turned the tables on that, by providing Patience with a voice.
Regardless of whether she was able to talk, move, feed. herself, etc., she still has opinions, and thoughts, reminding me that we never know what is going on in the mind of someone we may consider 'disabled'.
Thoroughly enjoyed this.
Many thanks to NetGalley and Head of Zeus for an ARC in exchange for an honest opinion.
No, seriously, I haven't felt gushy about a book for a while, now, and this one, well, it gave me the feels.
Now, it's not a rom-com, as I usually enjoy, but the story of Patience, a woman diagnosed with Rett Syndrome in childhood, captivate me.
I enjoyed how the book was written, with Patience's point of view given through her thoughts, since, she is unable to talk, and the differing viewpoints of her family: both parents and her sister, Eliza.
Life can't be easy as a carer, and member of family of an individual who is diagnosed with such a disorder. You often find the world sympathising with them, but this also turned the tables on that, by providing Patience with a voice.
Regardless of whether she was able to talk, move, feed. herself, etc., she still has opinions, and thoughts, reminding me that we never know what is going on in the mind of someone we may consider 'disabled'.
Thoroughly enjoyed this.
Many thanks to NetGalley and Head of Zeus for an ARC in exchange for an honest opinion.
July 30, 2025
Wasn't expecting I would enjoy this story so much! I imagined it would be tragic and deep and sad. It is all that, but the rays of light and hope in there make for such a beautiful, captivating story. The characters are certainly flawed, but they're also real, and it's this candid rawness amid their respective realities all bridged by their love for Patience made this a delicious treat I couldn't wait to get back to whenever I had to close the book.
Does it end 'too well'? Maybe...but then again, why not?
It's sweet, poignant, harrowing, grips you by the throat, never lets you go... I also didn't know a thing about Rett Syndrome and learned so much through this tale, and it was also an eye-opener to peek behind the curtains of life with a person with a disability.
Come for the story, stay for the emotions. I wasn't disappointed in the least!
Does it end 'too well'? Maybe...but then again, why not?
It's sweet, poignant, harrowing, grips you by the throat, never lets you go... I also didn't know a thing about Rett Syndrome and learned so much through this tale, and it was also an eye-opener to peek behind the curtains of life with a person with a disability.
Come for the story, stay for the emotions. I wasn't disappointed in the least!
August 9, 2022
Brilliant book, as a parent of a daughter with Rett Syndrome, Victoria has captured the absolute essence of what I see within my daughter, the understanding that they do understand what is going on around them. Superb.
August 18, 2021
A real eye-opener about the life of a family with a disabled adult child to care for.
Patience has Rett’s syndrome which has prevented her from living life to the full; her family have loved and cared for her, entirely unaware of how much she takes in of the world around her. Elder sister Eliza tries her best to live life for both of them, for their parents’ sake. Mum Louise copes on her own most of the time as Pete, their dad, works abroad for the extra cash it brings in, necessary to cover expenses. Now there is the chance of getting Patience on to a trial which may – or may not – improve her quality of life and this begins to tear at the very foundation of this family. What will they decide and how will it affect them all?
This is very different from my usual type of read, but it is really well-written with a good story as well as raising awareness of this dreadful condition. I sympathised with each member of the family and how Rett’s syndrome affected them, but over and above that it is a tale about family dynamics. A shining example of how alert a person can be even if they don’t look it! Each harbouring their own secrets, it is impossible to tell how it will end. An enlightening read and one I enjoyed. I’m very happy to give this one four stars.
Patience has Rett’s syndrome which has prevented her from living life to the full; her family have loved and cared for her, entirely unaware of how much she takes in of the world around her. Elder sister Eliza tries her best to live life for both of them, for their parents’ sake. Mum Louise copes on her own most of the time as Pete, their dad, works abroad for the extra cash it brings in, necessary to cover expenses. Now there is the chance of getting Patience on to a trial which may – or may not – improve her quality of life and this begins to tear at the very foundation of this family. What will they decide and how will it affect them all?
This is very different from my usual type of read, but it is really well-written with a good story as well as raising awareness of this dreadful condition. I sympathised with each member of the family and how Rett’s syndrome affected them, but over and above that it is a tale about family dynamics. A shining example of how alert a person can be even if they don’t look it! Each harbouring their own secrets, it is impossible to tell how it will end. An enlightening read and one I enjoyed. I’m very happy to give this one four stars.
August 15, 2021
This book is a thought-provoking, compelling and entertaining read, with lots of twists and turns and I never quite knew what was coming next. But more than being an excellent book, it is also an important one. Severe disability is rarely explored in fiction and almost never giving voice to a severely disabled protagonist. Her personality came through beautifully, sympathetically and strongly, not least because the author cleverly told her story through a first person, present tense narrative, whereas the other protagonists were told in third person, past tense. This has the effect of really drawing the reader into Patience's world. I absolutely loved Patience as a character - she is funny, smart and wise. The other characters in the book - Eliza, Pete and Louise also gained my sympathy and the effect of Patience's plight on the whole family was so well drawn. This is a book you will find hard to put down. Big questions about our values as a society, how we treat disability and the future of possible treatments will keep me thinking about the book for a long time, but Patience, her spirit and that of her whole family will stay with me too. Bravo to the author for this wonderful debut.
August 8, 2021
Plot: 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?
⭐ An extraordinary debut! - heartwrenching, gripping & hopeful.
⭐ Patience is funny, smart, opinionated & a huge Take That fan (all the best people are ). It was refreshing to read such a three-dimensional character, yes she is severely disabled but that is far from all she is.
⭐ A huge light is shone on Retts syndrome (a disability I'd never heard of until now) but the harsh realities of living with & caring for a person who is severely disabled aren't glamorized in any way.
⭐ Brilliantly written, Scott has struck the balance between humor & heartbreak perfectly.
⭐ It's a story that stays with you long after you have turned the final page & I wholeheartedly recommend it.
⭐⭐⭐⭐⭐
Disclaimer: A huge thanks to Head of Zeus for sending me this title for an honest & unbiased review. All opinions are my own.
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?
⭐ An extraordinary debut! - heartwrenching, gripping & hopeful.
⭐ Patience is funny, smart, opinionated & a huge Take That fan (all the best people are ). It was refreshing to read such a three-dimensional character, yes she is severely disabled but that is far from all she is.
⭐ A huge light is shone on Retts syndrome (a disability I'd never heard of until now) but the harsh realities of living with & caring for a person who is severely disabled aren't glamorized in any way.
⭐ Brilliantly written, Scott has struck the balance between humor & heartbreak perfectly.
⭐ It's a story that stays with you long after you have turned the final page & I wholeheartedly recommend it.
⭐⭐⭐⭐⭐
Disclaimer: A huge thanks to Head of Zeus for sending me this title for an honest & unbiased review. All opinions are my own.
August 18, 2021
Patience is one of those books that you will find a place in your heart and it will stay there forever. It is a powerful story full of raw, honest emotion that will pull at your heartstrings and your mind will be given plenty to contemplate and ponder over. It’s also a story filled with warmth, humour and moments of magic that will light up your life.
It’s hard to believe that Patience is the author’s debut novel as it is such an accomplished read. They do say write about what you know and Victoria Scott has channelled all her inside knowledge of growing up and living with a disabled young woman, all this experience has created Patience and I can’t thank Victoria enough for bringing to light this wonderful book.
Patience is a young woman who has been living with Rett syndrome for 30 years and this is her story and her family’s story coping with life and it’s ups and downs. The chapters in the story are told from different members of the family and are leading lady, Patience, has been given her own voice.
When Patience mum hears of a new ground-breaking gene therapy trial to reverse Rett all her hopes and dreams for Patience feel within grasping distance. However, this therapy is not without risks and a divide in the family supporting the trial brings many heart breaking and soul searching moments. Can a therapy to help Patience and others like her break the minds of those around them?
I loved this young woman Patience from the start and found myself getting emotionally charged from the first chapter. Patience is unique, she’s funny, she’s outspoken, she’s got a voice and opinion but due to her condition no-one else can hear her. The strain within a family bringing up a disabled child must be constant and the author has highlighted this with honesty and compassion. I also felt the overwhelming helplessness at times and also a love so strong nothing will come in it’s path.
I simply adored this story. A story of a family coping, adapting, facing obstacles, new beginnings, hope but most of all a family enjoying the uniqueness of each individual person.
Truly wonderful!
It’s hard to believe that Patience is the author’s debut novel as it is such an accomplished read. They do say write about what you know and Victoria Scott has channelled all her inside knowledge of growing up and living with a disabled young woman, all this experience has created Patience and I can’t thank Victoria enough for bringing to light this wonderful book.
Patience is a young woman who has been living with Rett syndrome for 30 years and this is her story and her family’s story coping with life and it’s ups and downs. The chapters in the story are told from different members of the family and are leading lady, Patience, has been given her own voice.
When Patience mum hears of a new ground-breaking gene therapy trial to reverse Rett all her hopes and dreams for Patience feel within grasping distance. However, this therapy is not without risks and a divide in the family supporting the trial brings many heart breaking and soul searching moments. Can a therapy to help Patience and others like her break the minds of those around them?
I loved this young woman Patience from the start and found myself getting emotionally charged from the first chapter. Patience is unique, she’s funny, she’s outspoken, she’s got a voice and opinion but due to her condition no-one else can hear her. The strain within a family bringing up a disabled child must be constant and the author has highlighted this with honesty and compassion. I also felt the overwhelming helplessness at times and also a love so strong nothing will come in it’s path.
I simply adored this story. A story of a family coping, adapting, facing obstacles, new beginnings, hope but most of all a family enjoying the uniqueness of each individual person.
Truly wonderful!
July 8, 2022
Thought provoking, emotional and heart warming.. such a beautiful story
August 7, 2021
Told from the perspective of 4 people ‘Patience’ is a moving story of a family living with Rhett syndrome, this is a fictional story however loosely based on the authors own experiences as her sister has Rhett.
Mum Louise is the primary carer for Patience & gave up her career to look after her, she is made aware of a gene therapy trial to reverse Rhett & goes into overdrive pushing forward for Patience to take part.
Dad Pete is harbouring his own secret, working in the Middle East to increase financial stability and coming home every month or so, he is not keen on the trial
Sister Eliza is juggling a hectic personal & work life, trying to be the best daughter & to cause little upset
Patience herself, she knows everything that’s going on but just can’t speak to allow people to hear what she wants to say on all matters!
It took me a while to get in to this book however once I did, I couldn’t put it down.
I laughed & I cried….. the author has done a great job of balancing both… you really don’t know how this will end.
Thanks to the publisher & netgalley for the opportunity to read & review this book in return for an honest review.
Mum Louise is the primary carer for Patience & gave up her career to look after her, she is made aware of a gene therapy trial to reverse Rhett & goes into overdrive pushing forward for Patience to take part.
Dad Pete is harbouring his own secret, working in the Middle East to increase financial stability and coming home every month or so, he is not keen on the trial
Sister Eliza is juggling a hectic personal & work life, trying to be the best daughter & to cause little upset
Patience herself, she knows everything that’s going on but just can’t speak to allow people to hear what she wants to say on all matters!
It took me a while to get in to this book however once I did, I couldn’t put it down.
I laughed & I cried….. the author has done a great job of balancing both… you really don’t know how this will end.
Thanks to the publisher & netgalley for the opportunity to read & review this book in return for an honest review.
August 7, 2021
Normal doesn’t exist. We are all extraordinary.
Patience is a truly remarkable debut. Heartbreaking, harrowing, honest and hopeful, this
is a thought-provoking, no-holds-barred look at what life is like for those with severe disabilities, how it affects their families, and challenges our concept of what a good life actually looks like.
Thirty-year-old Patience Willow has Rett Syndrome. She is unable to walk or talk and requires twenty-four hour care. When a new gene therapy offers the hope of reversing the condition, her family find themselves in an impossible dilemma. Is the chance of giving Patience the life they dreamed of for her worth the risks? And is it what she would want?
"She realised she had spent almost all of Patience's life waiting for a miracle."
The author tells the story from the points of view of each of the Willow family: Louise, Pete, Eliza and Patience. This allows us an intimate glimpse at the ripple effect of disability on those around them. We see the strain it has put on all of their relationships, especially Louise and Pete’s marriage, the financial strain, the pressure Eliza feels to fulfill her parents dreams and be everything her sister can’t, how caring for another person can slowly wear you down and the guilt and anger they all feel.
The decision to give Patience a voice is my favourite part of this book. And what a loud and memorable voice she has! By giving her the voice life has denied her, the author makes Patience visible and reminds the reader that she is a three-dimensional character who is as nuanced and complex as any other person. That she is someone who has her own thoughts, feelings, desires and dreams, despite her inability to communicate them. We get an insight into how she feels having to watch her sister have the things she can never have, how it feels knowing she is the ‘cause’ of her family’s struggles, and what life is really like for her. We are the only ones who get to see the woman she is inside, that she is an intelligent and funny person that understands everything. And I absolutely adored her.
“Over the years I’ve heard many doctors, carers, nurses and social workers debate whether I have a decent quality of life or not. So I’d like to state here, for the record, that I do. I don’t have anything to compare my life to, of course, but then, who does?”
Through this story the author challenges the concept of what a fulfilling and happy life actually is. As someone with a disability myself, albeit a much milder one than Patience, this is something I love and appreciate. Life doesn’t have to look a certain way to be valuable. A life with limits can be happy and meaningful and, as Patience herself observes, being able-bodied does not necessarily equal happiness and contentment in life. This is what is at the heart of the family’s dilemma over whether to enter Patience into the gene therapy. She seems happy, so is it worth risking that to give her a life they consider more ‘normal’? Personally, I would cure my own illnesses in a heartbeat and would love a better quality of life. But there are some risks I wouldn’t take to achieve that and it doesn’t make my life any less joyful or meaningful as it stands.
"But the thing was, he didn't see her as broken. He saw her as whole, as a person in her own right, her own special variety of normal."
Victoria Scott is a spectacular talent. She writes with heart, humour, compassion and raw honesty, managing to educate while also entertaining. I was completely invested in the lives of this family and they felt so real to me, like I could go to Oxford and pay them a visit. The Author’s Note at the end of the book is a must-read as she talks about her inspiration for the story. It was no surprise to learn that she has intimate knowledge of living alongside someone with Rett Syndrome and I believe this book will not only educate people like myself who knew nothing about the illness, but offer comfort to those who have a loved one with the illness.
An extraordinary story about family, love and hope, this is a book that will linger long after reading and hold a special place in my heart. Read this book. I can’t recommend it enough.
Patience is a truly remarkable debut. Heartbreaking, harrowing, honest and hopeful, this
is a thought-provoking, no-holds-barred look at what life is like for those with severe disabilities, how it affects their families, and challenges our concept of what a good life actually looks like.
Thirty-year-old Patience Willow has Rett Syndrome. She is unable to walk or talk and requires twenty-four hour care. When a new gene therapy offers the hope of reversing the condition, her family find themselves in an impossible dilemma. Is the chance of giving Patience the life they dreamed of for her worth the risks? And is it what she would want?
"She realised she had spent almost all of Patience's life waiting for a miracle."
The author tells the story from the points of view of each of the Willow family: Louise, Pete, Eliza and Patience. This allows us an intimate glimpse at the ripple effect of disability on those around them. We see the strain it has put on all of their relationships, especially Louise and Pete’s marriage, the financial strain, the pressure Eliza feels to fulfill her parents dreams and be everything her sister can’t, how caring for another person can slowly wear you down and the guilt and anger they all feel.
The decision to give Patience a voice is my favourite part of this book. And what a loud and memorable voice she has! By giving her the voice life has denied her, the author makes Patience visible and reminds the reader that she is a three-dimensional character who is as nuanced and complex as any other person. That she is someone who has her own thoughts, feelings, desires and dreams, despite her inability to communicate them. We get an insight into how she feels having to watch her sister have the things she can never have, how it feels knowing she is the ‘cause’ of her family’s struggles, and what life is really like for her. We are the only ones who get to see the woman she is inside, that she is an intelligent and funny person that understands everything. And I absolutely adored her.
“Over the years I’ve heard many doctors, carers, nurses and social workers debate whether I have a decent quality of life or not. So I’d like to state here, for the record, that I do. I don’t have anything to compare my life to, of course, but then, who does?”
Through this story the author challenges the concept of what a fulfilling and happy life actually is. As someone with a disability myself, albeit a much milder one than Patience, this is something I love and appreciate. Life doesn’t have to look a certain way to be valuable. A life with limits can be happy and meaningful and, as Patience herself observes, being able-bodied does not necessarily equal happiness and contentment in life. This is what is at the heart of the family’s dilemma over whether to enter Patience into the gene therapy. She seems happy, so is it worth risking that to give her a life they consider more ‘normal’? Personally, I would cure my own illnesses in a heartbeat and would love a better quality of life. But there are some risks I wouldn’t take to achieve that and it doesn’t make my life any less joyful or meaningful as it stands.
"But the thing was, he didn't see her as broken. He saw her as whole, as a person in her own right, her own special variety of normal."
Victoria Scott is a spectacular talent. She writes with heart, humour, compassion and raw honesty, managing to educate while also entertaining. I was completely invested in the lives of this family and they felt so real to me, like I could go to Oxford and pay them a visit. The Author’s Note at the end of the book is a must-read as she talks about her inspiration for the story. It was no surprise to learn that she has intimate knowledge of living alongside someone with Rett Syndrome and I believe this book will not only educate people like myself who knew nothing about the illness, but offer comfort to those who have a loved one with the illness.
An extraordinary story about family, love and hope, this is a book that will linger long after reading and hold a special place in my heart. Read this book. I can’t recommend it enough.
August 15, 2021
I fell head over heels in love with this story and the characters. Patience is a fantastic character that is so full of life. I love how she has a big voice in this narrative even though she is unable to physically speak out loud. She is smart, opinionated with a great sense of humour and she loves Take That! The reader gets to step into her shoes and gain an authentic lens into how she feels and what she wants, and how frustrating and upsetting it must be for her to be the centre of attention but unable to independently assert her own wishes and have a voice. It feels heartbreaking at times but I also love how this story celebrates the quality of life Patience has even though she may not be ‘normal’ questioning our view on how happy/unhappy people are based on their circumstances.
Scott also provides an empathetic perspective to all of the other characters that play a key role in Patience’s life. I feel like I have a real understanding into each person’s personal struggles in their own battles as well as grappling the moral dilemma of making the right decision on behalf of a disabled person.
I’ve not heard of Rhett syndrome so I also learnt a lot about what this genetic disorder is, and it was even more touching to learn that Scott has written this story based off her own personal experiences.
A brilliant book filled with so much heart and soul that is so warm, compassionate and empathetic. I’ve not read a book that really focusses on someone with disability and what life is like for people supporting and caring for someone with disability so this was definitely eye opening for me, and has really made me appreciate what life looks like for people in similar circumstances. A really celebratory and joyous viewpoint of life that while is not necessarily normal, can also be extraordinary and fulfilling too. Definitely one of my favourite reads of this year 💙💗
Scott also provides an empathetic perspective to all of the other characters that play a key role in Patience’s life. I feel like I have a real understanding into each person’s personal struggles in their own battles as well as grappling the moral dilemma of making the right decision on behalf of a disabled person.
I’ve not heard of Rhett syndrome so I also learnt a lot about what this genetic disorder is, and it was even more touching to learn that Scott has written this story based off her own personal experiences.
A brilliant book filled with so much heart and soul that is so warm, compassionate and empathetic. I’ve not read a book that really focusses on someone with disability and what life is like for people supporting and caring for someone with disability so this was definitely eye opening for me, and has really made me appreciate what life looks like for people in similar circumstances. A really celebratory and joyous viewpoint of life that while is not necessarily normal, can also be extraordinary and fulfilling too. Definitely one of my favourite reads of this year 💙💗
July 30, 2021
I was given the opportunity to read an advance copy of this by NetGalley and boy am I glad I was.
This is a wonderful story about Pete and Louise, and their two adult daughters Eliza and Patience. Patience has Rett syndrome, a condition which leaves her unable to use her body or communicate with her family. It soon becomes clear though that Patience is acutely aware of everything that goes on around her, and she has plenty of opinions about these things too! She adores Take That, hates daytime TV, and keeps all the secrets that people spill in front of, or to, her.
Patience has a chance to be included in a new medical trial that could change her life dramatically and the rest of her family struggle to decide whether to enrol her - the writing about these ordinary people, who are all struggling with their own issues, trying to make such a monumental decision about a person that they love dearly was absolutely superb. It never veers into sentimentality or trope, it always feels real, authentic, and relatable. This is probably due, in part, to the fact that the author has a sister with Rett syndrome so is drawing from her own experiences.
Although the main character is obviously Patience, the trials, tribulations, joys and despairs of Pete, Louise and Eliza are given plenty of attention too. This meant that I felt like I really knew this family and I was totally invested in all of their outcomes.
Above all, this is a fully inclusive representation of disability - whilst it is obviously an important plot point, it is not the only thing that we are shown about Patience, she is a fully rounded character with a personality to match. She has beautiful hair, a wicked sense of humour and strong thoughts about how she wants to live her life. A triumphant debut indeed.
This is a wonderful story about Pete and Louise, and their two adult daughters Eliza and Patience. Patience has Rett syndrome, a condition which leaves her unable to use her body or communicate with her family. It soon becomes clear though that Patience is acutely aware of everything that goes on around her, and she has plenty of opinions about these things too! She adores Take That, hates daytime TV, and keeps all the secrets that people spill in front of, or to, her.
Patience has a chance to be included in a new medical trial that could change her life dramatically and the rest of her family struggle to decide whether to enrol her - the writing about these ordinary people, who are all struggling with their own issues, trying to make such a monumental decision about a person that they love dearly was absolutely superb. It never veers into sentimentality or trope, it always feels real, authentic, and relatable. This is probably due, in part, to the fact that the author has a sister with Rett syndrome so is drawing from her own experiences.
Although the main character is obviously Patience, the trials, tribulations, joys and despairs of Pete, Louise and Eliza are given plenty of attention too. This meant that I felt like I really knew this family and I was totally invested in all of their outcomes.
Above all, this is a fully inclusive representation of disability - whilst it is obviously an important plot point, it is not the only thing that we are shown about Patience, she is a fully rounded character with a personality to match. She has beautiful hair, a wicked sense of humour and strong thoughts about how she wants to live her life. A triumphant debut indeed.
August 11, 2021
I absolutely adored this gorgeous story - what a treasure.
Patience may be trapped in a body that doesn’t want to move, unable to speak to those who love her, but she lives a rich inner life. She gets to watch all the drama unfold around her, and when things get too hard she can retreat into her own world. But then a clinical trial comes up which says it may be able to reverse Patience’s condition, and her family are suddenly at odds deciding whether it’s worth the risk - to the point where it may destroy her parents marriage. Is it worth putting Patience through this when she seems content as she is? And at what cost to the family?
Oh gosh, this one is a bit of a heartbreaker. Having never experienced disability first hand, this was a real eye opener as the author writes from personal experience. It was important to not only see the impact that such severe disability has on family and carers, but to also get that point of view from Patience. She’s such a wonderful and complex character and I just loved her immediately.
The decision of whether to try and give Patience a “normal” life, but with so many risks to the treatment including death, was a very thought provoking topic and one that I’d hope to never have to experience - I thought the author handled this subject really sensitively and covered the many different opinions and points of view that may be involved.
Outside of the focus on Patience, this is a story full of the drama’s of family life - from secrets and lies to friendship and romance. It’s poignant, funny, and utterly heartwarming. An astonishing debut which I guarantee you’ll fall for!
Patience may be trapped in a body that doesn’t want to move, unable to speak to those who love her, but she lives a rich inner life. She gets to watch all the drama unfold around her, and when things get too hard she can retreat into her own world. But then a clinical trial comes up which says it may be able to reverse Patience’s condition, and her family are suddenly at odds deciding whether it’s worth the risk - to the point where it may destroy her parents marriage. Is it worth putting Patience through this when she seems content as she is? And at what cost to the family?
Oh gosh, this one is a bit of a heartbreaker. Having never experienced disability first hand, this was a real eye opener as the author writes from personal experience. It was important to not only see the impact that such severe disability has on family and carers, but to also get that point of view from Patience. She’s such a wonderful and complex character and I just loved her immediately.
The decision of whether to try and give Patience a “normal” life, but with so many risks to the treatment including death, was a very thought provoking topic and one that I’d hope to never have to experience - I thought the author handled this subject really sensitively and covered the many different opinions and points of view that may be involved.
Outside of the focus on Patience, this is a story full of the drama’s of family life - from secrets and lies to friendship and romance. It’s poignant, funny, and utterly heartwarming. An astonishing debut which I guarantee you’ll fall for!
August 19, 2021
Wow, what an extraordinary debut! Beautifully written, heartbreakingly honest and yet both hopeful and inspiring, this is a story that will work it's way into your heart.
The story sensitively and with much compassion explores what it is like for those living with severe disabilities and the strains it can have on their loved ones. With a wonderful family taking centre stage, we witness the Willow family highs and lows, hopes and fears and become privy to their deepest secrets making it near on impossible not to feel attached. Being an onlooker to one of the toughest decisions a family could make (even fictionally) was a real eye-opener.
Patience herself, although unable to talk, is given a voice on the pages, enabling her to be heard by the reader and there for "seen" a choice that I loved as her narration was my favourite to read, I whole heartedly fell in love with her huge character and found her chapters brought real depth and meaning to the story - representation at its finest!
The book does a really brilliant job of raising awareness of Rett Syndrome (a condition I hadn't heard of) which can only be a good thing. What makes it even more special is knowing that the author has written from her own experiences - this came across in her empathetic writing style. It's a warm, brave and thought-provoking debut that was an absolute pleasure to read!
🦋💕
The story sensitively and with much compassion explores what it is like for those living with severe disabilities and the strains it can have on their loved ones. With a wonderful family taking centre stage, we witness the Willow family highs and lows, hopes and fears and become privy to their deepest secrets making it near on impossible not to feel attached. Being an onlooker to one of the toughest decisions a family could make (even fictionally) was a real eye-opener.
Patience herself, although unable to talk, is given a voice on the pages, enabling her to be heard by the reader and there for "seen" a choice that I loved as her narration was my favourite to read, I whole heartedly fell in love with her huge character and found her chapters brought real depth and meaning to the story - representation at its finest!
The book does a really brilliant job of raising awareness of Rett Syndrome (a condition I hadn't heard of) which can only be a good thing. What makes it even more special is knowing that the author has written from her own experiences - this came across in her empathetic writing style. It's a warm, brave and thought-provoking debut that was an absolute pleasure to read!
🦋💕
September 2, 2021
The story of two sisters one of whom has Retts disease. This book is about the effect that Patiience has on the family relationships and the coping systems they all have. As the book begins, Eliza's long term relationship is coming to an end . The reasons are gradually revealed.
Their parents cannot agree on the use of a new therapy for Patience and this creates problems between them. The descriptions of friendships and relationships was excellently done. Very believable and easy to read the reasons for not talking about feelings is clear because sometimes the care for Patience takes precedence.
That Rett's disease was not identified until relatively recently was a suprise for me (I have worked in childrens' hospital care for many years) It was extremely well described though.
This book is written from the personal experience of the author, that shines through. It follows the ups and downs of being a family of carers, with some insight into the life of the person being cared for, warts and all. It is a read which gives you food for thought, I will be thinking about it for a while
Thank you to Net Galley for the ARC in exchange for an honest review
Their parents cannot agree on the use of a new therapy for Patience and this creates problems between them. The descriptions of friendships and relationships was excellently done. Very believable and easy to read the reasons for not talking about feelings is clear because sometimes the care for Patience takes precedence.
That Rett's disease was not identified until relatively recently was a suprise for me (I have worked in childrens' hospital care for many years) It was extremely well described though.
This book is written from the personal experience of the author, that shines through. It follows the ups and downs of being a family of carers, with some insight into the life of the person being cared for, warts and all. It is a read which gives you food for thought, I will be thinking about it for a while
Thank you to Net Galley for the ARC in exchange for an honest review
July 20, 2021
Patience is a beautiful young lady. A much-loved daughter and sister. Funny, incisive, observant. Patience is also a huge Take That fan.
Patience cannot however share her thoughts and observations with her family as she has Rett syndrome. She is unable to communicate or look after herself and is reliant on her mother and carers for everything. Those around her are uncertain as to what Patience can hear and understand, which leads to some interesting internal narrative from Patience.
Offered the opportunity to participate in an experimental gene therapy trial, we are given a raw insight into a family torn apart by differing opinions - and most importantly that Patience isn't able, or asked, to take part in the decision.
This book is a treasure. Victoria Scott's author's note at the end explains how she is able to dissect this family and their actions. I felt privileged to be allowed into this thought-provoking world. Thank you Netgalley and Head of Zeus for this ARC. In particular, thank you to Victoria Scott for this wonderful debut.
Patience cannot however share her thoughts and observations with her family as she has Rett syndrome. She is unable to communicate or look after herself and is reliant on her mother and carers for everything. Those around her are uncertain as to what Patience can hear and understand, which leads to some interesting internal narrative from Patience.
Offered the opportunity to participate in an experimental gene therapy trial, we are given a raw insight into a family torn apart by differing opinions - and most importantly that Patience isn't able, or asked, to take part in the decision.
This book is a treasure. Victoria Scott's author's note at the end explains how she is able to dissect this family and their actions. I felt privileged to be allowed into this thought-provoking world. Thank you Netgalley and Head of Zeus for this ARC. In particular, thank you to Victoria Scott for this wonderful debut.
August 9, 2021
I really enjoyed this book. The story of the Willow family; mum Louise, dad Pete, and adult daughters Eliza and Patience. Patience is disabled. living with Rett syndrome, which we find more about as the book progresses. A happy soul, she has no speech, and as far as anyone knows, no understanding and a mental age of a toddler. However the story is told from the different viewpoints of the family members - including Patience. And we observe how much she understands, and how she is content in her own dream world. Being a permanent carer has worn Louise down and when she gets the opportunity to put Patience forward for a medical trial to reverse the gene that causes her condition, she is keen to go for it. Pete worries about the side effects and reasons that Patience is happy as she is. The family is being torn apart. Meanwhile, Eliza has her own problems that she keeps to herself so as not to add to her parents' burden. A very real story, of a family who care deeply about one another, but don't know how to show it. Thought provoking and it held my attention. #netgalley #patience
March 9, 2022
This author was new to me when I picked this up. I didn't have any expectations, and wasn't prepared how amazing this was going to be. Patience is a severely disabled young lady, that people assume can not comprehend what is going on around her, but although her body doesn't work, her mind definitely does.
The insight of Patience's world was both refreshing and heart-breaking. She was desperate to communicate with her family, and the bond that she has with her sister is just delightful. The focus around family dynamics, the opportunity of a drug trial that she has been offered as well as everyone else's life as it evolves, makes this an incredible read. I have never read anything like this before, and I was impressed by how well the emotions of all involved were portrayed. This made me laugh and cry in equal measures, and I was oozing empathy towards every member of this family by the end.
I will definitely be reading more by this author in the future, and if you are looking for a read that approaches disability with an unbiased perspective, this is a must read!
The insight of Patience's world was both refreshing and heart-breaking. She was desperate to communicate with her family, and the bond that she has with her sister is just delightful. The focus around family dynamics, the opportunity of a drug trial that she has been offered as well as everyone else's life as it evolves, makes this an incredible read. I have never read anything like this before, and I was impressed by how well the emotions of all involved were portrayed. This made me laugh and cry in equal measures, and I was oozing empathy towards every member of this family by the end.
I will definitely be reading more by this author in the future, and if you are looking for a read that approaches disability with an unbiased perspective, this is a must read!
November 1, 2021
I wasn’t sure what to expect from this book. Judging from the publisher description, it isn’t exactly my usual kind of read. But something about the blurb reached me, so I picked it up. And I am so very glad that I did. This was an amazing story about the everyday pressures that face a family coupled with the stress of an incapacitated family member. It is a skillfully told tale that had me laughing and crying throughout. The chapters were written from four different points of view in no particular order or pattern. But it was never confusing. Patience is by far the most unique character I have read in recent memory. It was obvious that this was a personal story, because the emotions and events were told with such care that they couldn’t be anything but real. And that authenticity it what gave the story its heart. For more details, please visit Fireflies and Free Kicks. This review was written based on an advanced digital copy of the book from Head of Zeus.
July 22, 2021
Patience was a thought provoking book based on the author's real life experience with her sister who has Rett Syndrome.
I loved reading the perspective from all members of the family and what each of them were going through when faced with the dilemma of the gene therapy pros and cons.
The author found the right balance between keeping things light when dealing with some very serious issues. I particularly like reading at the end that she imagines what her sister is thinking and feeling as that was a question that I had whilst reading from Patience's perspective. Would Patience have the mental and emotional maturity that was captured or would she be stuck back in time? Was all her knowledge gained through watching TV or did the family spend time teaching her about the world or was it the interactions going on around her?
I loved reading the perspective from all members of the family and what each of them were going through when faced with the dilemma of the gene therapy pros and cons.
The author found the right balance between keeping things light when dealing with some very serious issues. I particularly like reading at the end that she imagines what her sister is thinking and feeling as that was a question that I had whilst reading from Patience's perspective. Would Patience have the mental and emotional maturity that was captured or would she be stuck back in time? Was all her knowledge gained through watching TV or did the family spend time teaching her about the world or was it the interactions going on around her?
August 5, 2021
I was curious about this unusual story dealing with adult disability, written from the point of view of all four members of the Willow family. Patience has Rett syndrome which, according to an NHS site, is a rare genetic disorder that affects brain development, resulting in severe mental and physical disability.
The story spirals around the characters, gradually revealing their roles – carer, provider, sister, invalid. As the layers are loosened and revelations made to the reader, we learn of their frustrations and fears, what makes them tick and why they act as they do. Author Victoria Scott presents a realistic, pragmatic and unsentimental telling of a difficult and emotional situation, with surprising humour in dark places.
I found Patience an absorbing page-turner, with a hopeful conclusion.
The story spirals around the characters, gradually revealing their roles – carer, provider, sister, invalid. As the layers are loosened and revelations made to the reader, we learn of their frustrations and fears, what makes them tick and why they act as they do. Author Victoria Scott presents a realistic, pragmatic and unsentimental telling of a difficult and emotional situation, with surprising humour in dark places.
I found Patience an absorbing page-turner, with a hopeful conclusion.
September 5, 2021
As soon as I heard about this book I was really intrigued and excited to read it and it absolutely did not disappoint.
Patience is a stunning debut novel about family, disability and the ethics of change.
Patience has Rett Syndrome and has lived her life locked behind her disability, observing the world but never fully experiencing it. When her parents are offered the chance to let Patience participate in a trial to cure her Rett Syndrome, they face a truly terrifying dilemma. The chance for a cure with a whole list of potential risks.
The story is told from multiple POV including Patience's own and also tells the parallel tales of her parents and her big sister. It's heartwarming, beautiful and unputdownable. I loved it. Absolutely loved it ♥️ my favourite book this year.
🌟🌟🌟🌟🌟💫
Patience is a stunning debut novel about family, disability and the ethics of change.
Patience has Rett Syndrome and has lived her life locked behind her disability, observing the world but never fully experiencing it. When her parents are offered the chance to let Patience participate in a trial to cure her Rett Syndrome, they face a truly terrifying dilemma. The chance for a cure with a whole list of potential risks.
The story is told from multiple POV including Patience's own and also tells the parallel tales of her parents and her big sister. It's heartwarming, beautiful and unputdownable. I loved it. Absolutely loved it ♥️ my favourite book this year.
🌟🌟🌟🌟🌟💫
April 1, 2022
‘Patience’ made me feel all the emotions, it’s one of those that will stick with me. I felt an affinity to Eliza - the relationship she had with Patience made me look more closely at my relationship with my sister. I really enjoyed the chapters from Patience’s perspective, some of them brought me close to tears (especially when she was talking about the music therapy sessions) but it was refreshing to hear the story from her. I felt like I was going on the gene therapy journey with the family, and was on tenterhooks with every chapter, every update, willing the process to work.
Knowing the story is based on the author’s own family experience with Rett syndrome makes it even more poignant.
I could go on! Please read this book if you get the chance!
Knowing the story is based on the author’s own family experience with Rett syndrome makes it even more poignant.
I could go on! Please read this book if you get the chance!
July 28, 2021
A touching, sensitive book that doesn't resort to tearjerking emotion nor saccharine sentimentality. It deals, quite matter-of-factly with the day to day reality of caring for someone who is very, very disabled and the way life inevitably centres on them. I once worked closely with a child whose life was severely limited and who died in great pain at the grand old age of 9. One family member described this child as not the centre of the family but their sun, around which they circled, with no choice in the matter but without that sun they viewed themselves as having no life, so they were glad of him. Such nobility is portrayed is this book I feel.
August 5, 2021
My normal reading genres are based around romance, with a touch of humour. This is totally different, being based around a severely disabled girl and her family. It reminds me of another book that I really enjoyed, The One Hundred Years of Lenni and Margot by Marianne Cronin, really drawing me into the story and characters.
The multi - viewpoint works really well, showing how each of the characters is affected, especially for Patience and her inner thoughts that she is unable to communicate. Each of the family has their own struggles which threatens to split them apart, but there is an overall bond of love that clearly sounds through.
I can highly recommend this book, be prepared for a very emotional journey but an overall lifting experience.
I received an advance copy of this book from the publisher through Netgalley, however this did not influence my review of the book
The multi - viewpoint works really well, showing how each of the characters is affected, especially for Patience and her inner thoughts that she is unable to communicate. Each of the family has their own struggles which threatens to split them apart, but there is an overall bond of love that clearly sounds through.
I can highly recommend this book, be prepared for a very emotional journey but an overall lifting experience.
I received an advance copy of this book from the publisher through Netgalley, however this did not influence my review of the book
November 5, 2021
This is a fantastic book. Patience is probably one of the best drawn characters that I’ve ever encountered, and despite her Rett Syndrome leaving her non-verbal, she has a lot to say, a wonderful way with words and THE BEST sense of humour.
Based on the author’s real life experience growing up with a sister with Rett Syndrome, the characters in this book are very believable and I was completely hooked. I would recommend this book to anyone – it tackles some very big issues and complex ethical and moral questions, but with a deft lightness of touch. The Willow family feel like friends to me, and I can’t see me forgetting about them in a hurry. Absolutely a novel that both the heart and mind can fall in love with.
Based on the author’s real life experience growing up with a sister with Rett Syndrome, the characters in this book are very believable and I was completely hooked. I would recommend this book to anyone – it tackles some very big issues and complex ethical and moral questions, but with a deft lightness of touch. The Willow family feel like friends to me, and I can’t see me forgetting about them in a hurry. Absolutely a novel that both the heart and mind can fall in love with.
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