Sister of Kettering boy with life-limiting Batten Disease says 'I can’t watch my brother disappear without doing something to try and help'

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The big sister of an eight-year-old Kettering schoolboy with a life-limiting disease has held an awareness event at her primary school.

Year 6 pupil Eva Tilley led a special assembly to tell her Hayfield Cross school pals and teachers about Batten Disease – the neurodegenerative condition affecting her brother Isaac.

In an emotional presentation, Eva, 11, said she wanted to help find a cure for the disease that is causing her brother to ‘disappear’.

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Watched by her mum Aimee, dad Adrian and her brother, Eva talked through a power point all about Isaac and Batten Disease.

Isaac Tilley, 8, and big sister Eva Tilley, 11 at the Batten Disease Awareness Day event at Hayfield Cross Primary School/National WorldIsaac Tilley, 8, and big sister Eva Tilley, 11 at the Batten Disease Awareness Day event at Hayfield Cross Primary School/National World
Isaac Tilley, 8, and big sister Eva Tilley, 11 at the Batten Disease Awareness Day event at Hayfield Cross Primary School/National World

She said: “I want to do a Batten Disease Awareness Day because I can’t watch my brother disappear without doing something to try and help. I want to raise money to help find a cure and to help other families like ours.”

Batten Disease causes the brain to shrink which means children stop being able to walk, talk, play and eat. Children also slowly lose their sight.

She said: “Children with Batten Disease do not grow up into adults. My brother Isaac has CLN2 Batten Disease which has a life expectancy of six to 12-years-old.”

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Although there is no cure, Isaac has the one form of Batten Disease that can be treated to slow down the progression of the disease. Every fortnight Isaac receives medicine into his brain at Birmingham Children’s Hospital.

Isaac Tilley, with sister Eva, 11, mum Aimee and dad Adrian at the International Batten Disease Awareness Day event at Hayfield Cross Primary School in Kettering/National WorldIsaac Tilley, with sister Eva, 11, mum Aimee and dad Adrian at the International Batten Disease Awareness Day event at Hayfield Cross Primary School in Kettering/National World
Isaac Tilley, with sister Eva, 11, mum Aimee and dad Adrian at the International Batten Disease Awareness Day event at Hayfield Cross Primary School in Kettering/National World

Eva said: “As Isaac’s sister, it is very upsetting to see Isaac lose his abilities. Seeing Isaac happy makes us happy, especially when he is able to access something the same as other children his age.

“I really want to raise money for the Batten Disease Family Association because they help all families with Batten Disease. They provide training for schools with pupils with Battens, they provide talking therapy, raise awareness of the disease and fund research into therapies and potential cures. We all need their help and support. We hope one day they will help find a cure.”

After the assembly Eva and her friends sold refreshments, cakes, plants and crafts to add to funds from an ‘orange’ mufti day.

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Eva added: “I want to say thank you to everyone for their donations.”

Sunday marks International Batten Disease Awareness Day and the charity is asking people to raise awareness of the cause by turning the UK orange, the colour of the logo.

Mum Aimee said: “She’s the best big sister. The bond between them is brilliant.”

Dad Adrian added: “I had a tear in my eye. I’m really proud of her.”

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