19 Jun A powerful story of hope, love, and family resilience…
Claire Audibert grew up in picturesque Normandy, France before moving to Australia in her mid-twenties for love and a new adventure.
In 2014, Claire and her husband Cedric were overjoyed when they fell pregnant with their first child whilst living in Sydney. Moments after their little boy Eliott was born Claire began to notice his little body start twitching repeatedly and he was quickly sent to the Newborn Intensive Care Unit (NICU) for testing and observation. The ensuing days and weeks left Claire and Cedric’s lives changed irrevocably, as their dreams of parenthood were shattered forever.
After weeks in hospital and an endless series of invasive tests, two-week-old Eliott was discharged with suspected KCNQ2 epilepsy. KCNQ2 is a rare form of developmental and epileptic encephalopathy, children with this disease typically experience multiple daily seizures that typically begin within the first week of life. These seizures are often present as stiffening seizures and may be accompanied with changes in breathing or heart rate.
This month, Claire is releasing her memoir detailing the first two and a half years of her son’s life called, The Letter E, a raw and honest account of what it is to be a first-time mum of a child with complex needs in today’s world.
The book is told through both Claire’s and Eliott’s voices and follows their family’s journey as they are thrust into a medical world where they need to learn on the go, whilst learning to be new parents to a baby whose future is so uncertain. This heartrending memoir demonstrates the ups and downs as they learn to come to grips with this incurable disease and how it affects their day-to-day life and ultimately upends their journey into parenthood. Claire’s book is inspiring story about hope and love and how they learnt to redefine their vision of what it means to be a family.
The seizures in KCNQ2 often resolve within months to years but children, such as Eliott, have varying degrees of developmental impairment involving one or more domains including motor, social, language and cognition. There is wide variability in the symptoms of patients with a KCNQ2 diagnosis. Some have very limited, or no noticeable seizure activity and the developmental impairment can range from mild to severe, depending on a number of different factors. Some children may also have autistic features or other comorbidities.
Claire says, “The day our son Eliott was born remains the most beautiful, most traumatic, most life-defining, and toughest day of my life. Around the time of his first birthday, I looked for support and comfort in books. I wandered local bookstores to find testimonials of fellow parents who may have shared their journey. I couldn’t find anything. I started writing the book I would have wanted to read. I told our family story through both my and my son’s voice. It makes the narrative as raw as I thought it should be, as honest as I needed it to be, and as light as I think my son would want it to be. It is full of hope, love, and laughter, but it is also full of hard truths, and paints a very distinct and raw picture of what it is to be a first-time mum of a child with complex needs in today’s world. My hope is that The Letter E becomes a resource for other parents, but also their own support networks, family, friends, therapists, doctors, teachers and educators, or anyone who is curious to learn more about what it can be like to welcome a child with complex medical needs into a family.”
The Letter E is an honest and deeply personal account of one family’s agonising experience as they learn to live with this disease. It is a must read for anyone who wishes to understand more about living with a child with severe medical condition or indeed how to support someone who does.
The Letter E: A Powerful Story of Hope, Love, and Family Resilience. Learning to Live with Epilepsy
The book is available for purchase in e-book and paperback formats from via Booktopia, Book Depository, Amazon, and other online bookstores