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

‘Every day is precious with my Amelia-Rose’

06:30 01 April 2014

Bev Smith with her daughter Amelia Rose. Bev will be holding a fundraiser in April for Batten

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


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 8752-13-14AWBev 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.


Other News Stories

Yesterday, 19:37
An ariel view of the PegasusLife plans for Knowle.

A developer lined up to buy the East Devon District Council (EDDC) offices at Knowle has unveiled its vision for a retirement community on the site.

Read more
Yesterday, 16:59
The Sidmouth Friends of the Samaritans held their AGM this week. Pictured are chairman Sue Kensdale with from left Ron Harbour (treasurer), vice chairman Gerald Hayne and Denis Jones (sec). Photo by Simon Horn. Ref shs 3446-08-14SH. To order your copy of this photograph go to

The loss of Sidmouth’s Samaritans support group will have a ‘major impact’ on the running of the service, says the leader of the charity’s Exeter, Mid and East Devon branch.

Read more
Yesterday, 12:59
MP Hugo Swire visit the King's School this week where he is pictured meeting students in the Teen Health Group. Ref sho 7123-48-15SH. Picture: Simon Horn

Hugo Swire praised students for their ‘passionate determination’ to address important issues

Read more
Yesterday, 06:30
Sally Neal has become Sidmouth's first female Crew Manager. Ref shs 7512-48-15SH. Picture: Simon Horn

A firefighter has made history after becoming the first woman in Sidmouth to reach the rank of crew manager.

Read more
Thu, 19:30
Plans have been lodged for Hillside House

A former hotel and restaurant in Newton Poppleford could be converted into a 13-bed care home.

Read more
Thu, 14:30

A temporary tariff of £2 per day will be introduced at Sidmouth’s town centre car parks next week.

Read more
Wed, 18:30
Natasha Koshti.

The Budleigh Salterton Committee for Cancer Research UK is holding an Evening In India on Saturday, November 28, at 7pm in the Public Hall.

Read more
Wed, 17:41
The dip in Temple Street, Sidmouth. Ref shs 7614-48-15SH. Picture: Simon Horn

Devon County Council has announced drainage works will take place along Temple Street for five weeks from Monday, January 18.

Read more
Wed, 17:28
Cranbrook Railway Station. Ref mhc 3523-37-15TI. Picture: Terry Ife

AFTER many postponements, Cranbrook railway station will finally open on Sunday, December 13.

Read more
Wed, 16:12
Police are appealing for help in finding the culprit responsible for recent graffiti tags

One man has been questioned in connection with a recent bout of vandalism and officers are asking for more information or witnesses

Read more

Local Weather



max temp: 9°C

min temp: 4°C

Most Read News

Great British Life

Great British Life

Useful Links

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

Family Notices 24

Read Online

Read the Sidmouth Herald e-edition E-edition

Local business directory

Devon's trusted business finder

Find a job in Sidmouth

Find planning applications