Don't miss a story sign up to Sidmouth Herald's FREE daily newsletter CLICK HERE

‘Every day is precious with my Amelia-Rose’

PUBLISHED: 06:30 01 April 2014

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

Archant

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.

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 8752-13-14AW 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 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.

Other News Stories

18:00

A project seeking to place up to 57 new blue plaques in Sidmouth is seeking support from owners of interesting buildings.

Read more

A short film telling the story Sidmouth’s last fishing family’s ‘passion, loss and resilience’ got regional exposure on BBC One and is still available online.

Read more
13:43

Emergency services were called to a crash near Ottery St Mary today (Friday).

Read more

Council bosses will soon write to Sidmouth residents and businesses to ask if they will help to fundraise the £3.3million needed to pay for much-needed sea defences.

Read more
12:11

Our Devon quiz is back for another round!

Read more

Firefighters from Ottery St Mary were on scene for nearly an hour after a vehicle caught fire on the B3180.

Read more

South West Water has completed a £5million project to construct a new wastewater treatment works near Ottery.

Read more

A Sid Valley Rotarian will join 90 volunteers from clubs across Great Britain and Ireland to immunise 170million Indian children against polio in a 
single day.

Read more
Yesterday, 17:30

A popular member of staff is taking over as front of house manager at Tickety-Boo.

Read more
Yesterday, 08:45

Devon and Cornwall residents are being polled on whether they would pay another £12 a year to ‘protect frontline policing’.

Read more

Local Weather

Partly Cloudy

Partly Cloudy

max temp: 5°C

min temp: 3°C

Most Read News

Useful Links

Family notices
Advertise in the paper
Submit a Story
Submit a Story
Buy Photos
Competitions
iwitness24
Facebook
Twitter
Google Plus Page
Reader Travel

Family Notices 24

Read Online

Image
Read the Sidmouth Herald e-edition E-edition

Newsletter Sign Up

Sign up to receive our regular email newsletter

Local business directory

Devon's trusted business finder

Show Job Lists


Find planning applications