A Saffron Walden mum whose daughter has a rare genetic condition has spoken about the "invaluable" help of a charity's Help at Home service.

Nine-year-old Winnie Heath is one of only 15 children in the world known to have a variant of the CDK8 gene.

She also has epilepsy and a congenital heart defect, is unable to walk or talk and is blind.

Saffron Walden Reporter: Winnie Heath with sisters Molly and WandaWinnie Heath with sisters Molly and Wanda (Image: EACH)

Winnie receives care from East Anglian Children's Hospices (EACH) and its Help at Home service - where a volunteer is paired with a family to provide practical support such as gardening, shopping, cooking, vacuuming, washing and more.

"We’ve had so much invaluable help down the years. It’s been amazing – a real saviour and game-changer," Winnie's mum, Fiona Eldridge, said.

"It makes such a difference – in terms of practical help, of course, but also just knowing that some wonderful, kind, cheerful person with a positive, can-do attitude is there to support you."

Explaining the support the charity provides, Fiona added: "We barely have a spare minute and are permanently short of time, because we have to care for Winnie. It’s exhausting and we don’t have down days.

Saffron Walden Reporter: Fiona Eldridge, husband James and daughters Winnie, Molly and WandaFiona Eldridge, husband James and daughters Winnie, Molly and Wanda (Image: EACH)

"A task like cutting the grass, therefore, is always going to get pushed down the pecking order of jobs.

"It’s a massive weight off our shoulders - a real gift - and to say we’re grateful is an understatement."

Fiona, her husband James, and Winnie's sisters Molly - who will be 11 on January 30 - and Wanda, seven, have been supported by different volunteers through the years.

"One of our first volunteers was an amazing cook," Fiona said. 

"She’d come in and rustle up the most delicious one-pot dishes.

"Out of necessity, we ate a lot of quick dinners – not necessarily takeaways but things straight from the freezer.

"Suddenly we had someone coming in making these nutritious, tasty meals. It was a godsend and we all enjoyed her cooking very much, including Winnie."

On another occasion, a team of volunteers painted the entire upstairs of the family's new house, and their most recent volunteer helped maintain their garden.

Fiona, who - like her husband - is an NHS therapist, said: "Help at Home really helps as Winnie’s condition makes it necessary for us to work reduced hours, in order to care for her.


"She also has hugely high equipment and specialist therapy costs, in the form of physio and speech and language.

"That means there’s no spare money to pay someone to do jobs like gardening that we just don’t have time to do. That’s another reason why having a volunteer is so fabulous."

When she was born in December 2014, Winnie was found to have cysts on her brain and went into heart failure, and was not expected to survive.

The family has been supported by the hospice since 2015.

Fiona said: "Despite her challenges, Winnie is a true fighter and has made amazing progress.

"We’re so proud of her and she’s an amazing little girl, despite having so much to contend with."