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'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 8752-13-14AWBev 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.

0 comments

Other News Stories

Yesterday, 19:37

Proposed cuts to community recycling groups could ‘threaten the existence’ of a popular Ottery service, fear civic leaders, writes Clarissa Place.

Read more
Yesterday, 14:32

Community gathering to discuss proposals that would see town lose inpatient bed unit

Read more
Yesterday, 12:08

Firefighters were called to Harcombe after reports of a tractor caught fire.

Read more
Yesterday, 11:40

District councillors have defied officer advice and refused plans for a 113-apartment retirement community on the site of their current Knowle HQ.

Read more
Yesterday, 10:48

Fire crews from Sidmouth were called to the scene.

Read more
Yesterday, 10:30

The county council is calling for a pause to planned hospital cuts across Devon.

Read more
Yesterday, 06:07

Replenishment work to add ‘blanket of protection’ for town in response to concerns

Read more
Thu, 17:37

Festive cheer filled the air in Ottery St Mary as crowds gathered for the town’s annual Christmas lights switch-on and late-night shopping event.

Read more
Thu, 17:00

Traders decked the streets and welcomed in shoppers with mince pies and mulled wine as late-night shopping returned to Sidmouth.

Read more
Thu, 16:30

Reported crime in Sidmouth was down marginally last month compared to November 2015.

Read more

Local Weather

Rain

Rain

max temp: 13°C

min temp: 8°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

Local business directory

Devon's trusted business finder

Show Job Lists


Find planning applications