‘These have been the hardest days of my life. I was coming to terms with the fact that our introduction to parenthood was different from most people, that I wouldn’t have these first few days on the postnatal ward with my baby by my side and thinking that it didn’t matter, as long as we could go home together … Arriving home, without my pregnant belly and without my baby, is even harder than I imagined … I just want to have Eliott next to me. I want him to be with us.’ Claire has just given birth to a seemingly healthy baby boy and is ready to get into the work of being a mother. She never expected it to be easy, but in the weeks that follow, the new parents find that their parenthood journey is going to be very different from what they’d imagined.

Suddenly, they’re thrust into a medical world where they need to learn on the go, whilst also learning to be new parent to a baby whose future is so uncertain.

The path to diagnosis is agonisingly slow, but once they know, they find an inner strength to fight for their baby and help him reach his potential.

This memoir explores the journey of learning to live with an incurable disease and finding ways to survive each day and find the light. More than anything, it is a story about love and hope, and redefining their vision of a family.

An honest and moving tale about the path to diagnosis and then ‘acceptance’ of the diagnosis label. As Eliot receives a diagnosis, Claire must advocate for him as an individual to not be defined by any preconceived notions of that very diagnosis.

• Scotty Sims, Co-founder and Director, KCNQ2 Cure Alliance