Mum and dad 'shattered' to learn daughter, 1, has rare genetic condition that means she may never speak

A mum was left "shattered" after discovering her young daughter has a rare genetic condition affecting her brain, meaning she will never be able to speak, may struggle to walk and could require lifelong care. Leigh Grant, 34, from Sutton-on-the-Hill, Derbyshire, and her fiance Elliot Oxley, 29 - who have set up a GoFundMe campaign for expensive gene therapy in the States - welcomed their second daughter, one-year-old Etta, in October 2022. However, they soon noticed that her development wasn't progressing as expected when compared to their first child, five year old Florence.

READ MORE: 'I had to clean up pools of blood in my shop - it's scary to live here' Leigh, who runs a hair extension business, said Etta wasn't "meeting the usual milestones" like crawling and talking. After turning one, Etta began experiencing eye-rolls, seizures and "projectile vomiting", leading to three separate hospital admissions. Despite her vitals repeatedly coming back normal, Leigh and Elliot sought further answers and opted for private care.



In July this year, a neurologist diagnosed Etta with Rett syndrome, a rare genetic neurological and developmental disorder that affects brain growth. The news left the couple "shattered", knowing their daughter will "never speak", may struggle to walk or use her hands, and could need care for the rest of her life. Now, the parents are hesitant about having more children for fear they too might have the rare condition, even though they don't carry the gene themselves.

The family are pinning their hopes on gene therapy in the US to replace the faulty gene responsible for her illness. The treatment is complex and expensive, leading a family friend to launch a GoFundMe campaign to raise the necessary funds. "We were shattered and we don’t know why this has happened to us," Leigh told PA Real Life.

"How have we got one healthy daughter and then this has happened?" You can sign up to get the latest news, top stories and exclusives sent straight to your WhatsApp from the MyLondon team. To get stories sent to you, you need to already have WhatsApp. All you need to do is click this link and select 'join community'.

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Rett syndrome, the genetic disorder affecting Etta, usually manifests between six to 18 months of age and primarily affects girls. It can cause language and coordination impairments, repetitive movements, and those with the condition often experience slower growth, walking difficulties, and smaller head size. Leigh and her husband Elliot, who works as a director for Pearce Interiors, welcomed Etta into the world via an emergency C-section after complications during labour.

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