The parents of Ellie Mae Brownnutt, who had extremely rare Late Infantile Batten Disease, have praised the spirit of their daughter who passed away at Martin House Hospice on Friday.
The Cookridge youngster’s condition, which also affects her younger brother Caleb, four, starts at the age of three and sees children lose their mobility, speech and eyesight. Most children with the disease rarely live to see their teens.
Ellie Mae was taken to Leeds General Infirmary two weeks ago after suffering a series of epileptic seizures where it was found she was becoming increasingly immune to her medication and her parents Duncan and Lynsey were told she had days to live.
Her dad Duncan, 40, said: “She was six years old and had been fighting Batten Disease since she was three.
“She chose to fight it in her own style, with little complaint and often seeming as if she didn’t have a care in the world. A princess and a superhero.”
The family has organised a service of celebration and committal for Ellie Mae at St Chad’s Church, in Headingley, on Friday May 15 at 1pm.
Visitors have been asked to make the event a celebration, so formal dress is not required, with the colour pink particularly welcome, while donations to the Batten Disease Family Association would be preferred to flowers.
“She dealt with it all with her usual cheeky manner; as Rod [family friend] once told me, she was always the happiest girl in any room,” Duncan added.
Ellie Mae’s father Duncan is aiming to raise £5,000 for the Batten Disease Family Association (BDFA) this summer in a bid to pay for research and support for affected families.
He will cycle on a tandem with friend Rod Wark from Roros, in Norway – where the first case of Batten Disease was reported – to the Arctic Circle Centre over six days in July.
To donate visit www.justgiving.com/Duncan-Brownnutt4.