Leeds school remembers six-year-old girl as brother battles same terminal illness

PIC: Jonathan Gawthorpe
PIC: Jonathan Gawthorpe
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THE PARENTS of a six-year-old girl who died of a rare disease have thanked a Leeds school for keeping the youngster’s memory alive as their son battles the same terminal condition.

Duncan and Lynsey Brownnutt’s daughter Ellie Mae died of Late Infantile Batten disease in May 2015.

PIC: Jonathan Gawthorpe

PIC: Jonathan Gawthorpe

Their six-year-old son Caleb has lost his speech and mobility due to the degenerative illness.

Cookridge Primary School held a memorial day for former pupil Ellie Mae and unveiled a plaque and planted a pink blossom tree and released 60 pink balloons. Pink was Ellie Mae’s favourite colour.

Mrs Brownnutt, of Cookridge, said: “When you have lost a child the worst thing is feeling that people will forget her.

“Something like this shows she is very much not forgotten. Knowing she is loved and missed at school is very important.”

“Caleb is quite stable. He has lost his speech and his mobility and he is fed by a tube but he has still got his personality.

“He loves swimming and he loves going on the trampoline. He loves theme park rides, anything with a bit of speed and danger.

“It is just a case of trying to keep him comfortable. At any point he could just start going into decline. We are just day by day trying to keep him as happy as we can.”

Caleb is also a former Cookridge Primary School pupil. His former classmates gathered round and sang to him at the memorial event.

The children’s father Duncan Brownnutt, 42, has done a string of running and cycling fundraisers to help raise around £17,000 for the Batten Disease Family Association (BDFA), which supports families and funds research. He said: “The school has always been really supportive of both the kids. We know the same thing is going to happen with Caleb, which makes it particularly difficult for us. We both think it’s important not to forget Ellie Mae whilst we are caring for Caleb.”