If you were offered a chance to cure your child’s disease, would you take it?
Not a question we have to think very hard about at Reverse Rett, but, this is the fundamental question that underpins Victoria Scott’s new novel, Patience which will be published on August 5th 2021 by Head of Zeus.
Patience, who has Rett Syndrome, is in her thirties and like so many people with Rett, still lives at home being cared for full time by her mentally and physically exhausted mother, Louise, largely on her own.
When the opportunity for Patience to take part in a gene therapy trial arises, Louise throws herself full throttle into the process, even taking a job as Patient and Family Liaison with the clinical trial team who will be running the study.
But not all of Patience’s family are as keen for her to take part. Through the story, we get to know each of Patience’s close family members, including her Dad, Pete, her sister, Eliza, as well as her mum and witness the dynamic between each of these family members who are all facing their own individual struggles as well as the collective and chronic difficulties of loving and caring for someone with Rett.
We also from Patience herself, who like most people with Rett Syndrome, is completely unable to speak or communicate with the family who love her about the difficult choice they will have to make on her behalf.
I was grateful to have the opportunity to interview Victoria on this episode of the podcast to talk all about Patience; why she wrote this story, how she wrote it and about the characters we get to know. We also talked about her very personal experience of having a sister with Rett Syndrome herself, and everything that experience contributed to this extraordinary novel.
Prior to publication, Patience has already been very widely acclaimed. At Reverse Rett, we are keen to support this work which we hope will infuse a better understanding of Rett Syndrome, disability, love and family in and amongst the wider population.
Thank you so much to Victoria for taking the time to speak with me on the podcast. As always, please let us know what you think by leaving a review and hitting subscribe.
Kirsten Hesketh, author of Another Us, says of Patience:
‘An extraordinary novel about love and hope and family and what happens in the space between the words.’