‘Every day is precious with my Amelia-Rose’

Bev Smith with her daughter Amelia Rose. Bev will be holding a fundraiser in April for Batten's disease chairty. Picture by Alex Walton. Ref shs 8749-13-14AW Bev Smith with her daughter Amelia Rose. Bev will be holding a fundraiser in April for Batten's disease chairty. Picture by Alex Walton. Ref shs 8749-13-14AW

Tuesday, April 1, 2014
6:30 AM

A terminally ill nine-year-old has inspired her mum to start an international effort to raise awareness of her condition and funds for research.

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Bev Smith with her daughter Amelia Rose. Bev will be holding a fundraiser in April for Batten's disease chairty. Picture by Alex Walton. Ref shs 8752-13-14AWBev Smith with her daughter Amelia Rose. Bev will be holding a fundraiser in April for Batten's disease chairty. Picture by Alex Walton. Ref shs 8752-13-14AW

Bev Smith, 40, of Furzehill in Sidbury, is a daily carer for her youngest child Amelia-Rose, who has Batten disease – a debilitating and incurable neurological illness.

Doctors have given Amelia-Rose just years to live. Most sufferers rarely make it past their mid-teens.

She requires round-the-clock care from her mother, who says not enough people know about the fatal disease.

“It’s a mother’s worst nightmare,” said Bev. “Every day is precious.

“My daughter went from walking and talking to losing all cognitive function.

She has also lost her sight and has to be fed on a specialist diet.

“I was devastated when I was told she had Batten disease. I could not accept it. But she is definitely a fighter and a very happy little girl.

“From a very young age, Amelia-Rose showed lots of signs of autism,” added Bev. “Then she started suffering from seizures. She was clinically diagnosed with the illness four years ago and officially diagnosed in 2012.”

Following her diagnosis, Amelia-Rose’s condition deteriorated at a steady rate. In 2010, medical complications resulted in her contracting septicaemia.

The rapid decline of her daughter’s health has prompted Bev to organise a Batten disease coffee morning this summer. She has hopes of making it an official worldwide event.

Bev said: “Because Batten disease is non-government funded, money has to be raised for research. I have been in touch with other communities abroad, who have expressed an interest in holding coffee mornings. I also have friends in the UK who will be doing the same.”

Bev’s coffee morning will take place on Friday, June 6, at Sidbury Social Club, from 10am to 12.30pm.

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