Welcome to our series, RARE Reads—highlighting books in the rare disease space.

About the book

Helix of Love is a collection of poems written by parents of children with rare genetic conditions. The poems explore the lived experience of rare disease, and provide an outlet for reflecting on what everyday life is like at a time when so much focuses on the promise of genomic medicine. The book was produced as part of the ‘Ethical Preparedness in Genomic Medicine’ project, a large collaborative research programme funded by The Wellcome Trust and based at Brighton and Sussex Medical School and the University of Oxford.

About the authors

Helix of Love contains contributions from Paul Arvidson, Lisa Beaton, Alex Davey, Lorna Fillingham, Jillian Hastings-Ward and Jo Wright.

Paul Arvidson

Paul is already an author of Sci-Fi (featuring Space Hobbits on a lightless planet) and Thrillers (featuring a Sweary Teen in a wheelchair righting wrongs.) This is his first time since college writing poetry. It was freaking terrifying. He lives with his wife and two daughters and a varying number of pets in the beautiful Somerset countryside.

Lisa Beaton

I’m a mum to four children all of whom have a congenital medical and/or neurodevelopmental disorder; our two youngest children have an, as yet, unknown neuromuscular disorder. We live in North Yorkshire with two excitable dogs and a long-suffering cat! It’s a close call as to whether we are functionally dysfunctional or dysfunctionally functioning but baking and eating cakes features strongly in my skill set.

Alex Davey

Alex Davey is a botanist and mum living in Dunbar, southeast Scotland. She has three children: two fiercely independent and loving girls and one beautiful boy, Benjamin, who passed away from an unknown genetic condition in 2021, aged seven. Benjamin introduced Alex to many new friends among the disabled community, through whom she learned about the social model, the challenges of achieving equity, inclusion and access, and with whom she began the long, winding journey to discovering her own neurodivergence.

Lorna Fillingham

Lorna Fillingham is a mum who lives in North Lincolnshire. She has two children, the eldest of whom has severe physical and learning disabilities as a result of a rare genetic condition. In her spare time she fights for disability rights, as she has realised that her daughter is disabled as much by the built environment, by society and by attitudes, as she is disabled by her actual genetic condition. Together, she believes, we can build a better future.

Jillian Hastings Ward

Writing poetry during this project has taken me to some difficult places, but also allowed me to share some of the joy I find in small things. People look at our lives from the outside and make huge assumptions; projects like this are so important in sharing our realities. I’m proud to have helped to bring this project together and am inspired by my fellow writers. I hope you find a lot of food for thought here too.

Jo Wright

I’ve spent my whole career working with children and adults with learning disabilities. As a special education teacher, I prided myself on the relationships I was able to build with the children I supported and those who cared and advocated for them. However, it wasn’t until I had a child of my own, with a rare undiagnosed genetic condition, that I truly began to understand their experiences and how those can affect interactions and relationships with health and education services. I’m proud to be part of this project, of the work that we have produced collectively, and the powerful insight it gives into the complexities of living as part of a family affected by a rare disease.

You can read Helix of Love for free, visithttps://bit.ly/3WCw1ke.

Editor’s Note: If you’d like to share your book with our audience, email hello@rarerevolutionmagazine.com

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