A mother in Sutton-on-the-Hill, Derbyshire, Leigh Grant, 34, and her fiance Elliot Oxley, 29, were devastated after discovering that their one-year-old daughter, Etta, has Rett syndrome, a rare genetic condition affecting brain development. Etta’s symptoms, including seizures, eye-rolls, and difficulty in achieving milestones like crawling and talking, led to multiple hospital visits and a diagnosis that left the family “shattered”.
Rett syndrome, a rare neurological disorder that mainly affects girls, means that Etta will never speak, may struggle with mobility and hand use, and might require lifelong care. The family’s future plans, including having more children, are now uncertain as they explore gene therapy in the US as a potential treatment for Etta’s condition. A GoFundMe page has been set up by a friend to help with the costs involved.
Leigh described Etta as a “happy little girl” despite her challenges, and highlighted the emotional toll the situation has taken on the family. Physiotherapy sessions are aiding Etta’s development, but the road ahead remains unclear as they await further guidance from specialists on the best way forward.
The family’s journey with Etta’s diagnosis has touched the hearts of many, with support pouring in through the fundraiser. Despite the uncertainties, Leigh remains hopeful that gene therapy could provide some relief for Etta and others with Rett syndrome. The family’s resilience and the outpouring of support reflect the strength of their bond and the community around them during this difficult time.