‘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

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

18:23
Reverend Mac Dick present prizes to the runners-up in Ottery Station logo competition

It is full steam ahead for Ottery’s community hub as its success is reflected in more than 100 competition entries to design a new logo.

Read more
12:31
Beer primary school leavers with headteacher Martin O'Mahony. Ref shb 1500-30-15TI Picture: Terry Ife

Beer Primary School ‘is in safe hands’, says its outgoing headteacher.

Read more
Kat and John Lort of The Loft with staff Karl Main and Dave Legg celebrate making the top 100 of the best restaurants outside London. Ref shs 5681-31-15AW. Picture: Alex Walton

The owners of a popular Sidmouth restaurant say they are ‘going out on a high’ after it was named one of the best places to eat at in the country.

Read more
Yesterday, 18:23
Catherine and Lex Cochrane ran the Ottery St Mary 10km to raise more than £350 for the Devon Freewheelers

A couple who embarked on a whirlwind two-year mission of marathon running and mountain climbing have donated their latest fundraising efforts to the Devon Freewheelers.

Read more
Yesterday, 12:30
Les Lane,last year's president of the Sid valley rotary presents the keys to Mo Ayling. Ref shs 1555-31-15TI. Picture: Terry Ife

Blackmore Gardens was buzzing all day as the Sid Valley Rotary Club’s summer fair returned in Saturday’s brilliant sunshine.

Read more
Fri, 16:29
Paranormal activity or trick of the light? The supposed ‘ghost’ can be seen in the reflection of the mirror as  organist Nigel Ogden speaks.

This haunting image has left concert-goers wondering whether they weren’t the only ones enjoying the music – as a spooky shape resembling a ghost seemingly photo-bombs the shot.

Read more
Fri, 14:37
Lion President Ian Skinner presenting cheques to the local winners of the 2nd and 3rd prizes in last Sunday’s main yellow duck race. Mrs Richelle Hull (to the left of Ian) received a cheque for £100, and Mrs Melanie Pugsley (far right in photo, holding daughter Farah) received a £75 cheque.

A range of good causes have received a welcome cash boost thanks to a record breaking year at Sidmouth’s annual duck derby.

Read more
Fri, 14:31

Fire crews were called to tackle a major corn field blaze on Sidmouth’s coast path this morning (Friday).

Read more
Fri, 12:14
Sidford Brownies at Cookafest 2015, an annual event for all South West Rainbows Brownies and Guides

Girl guiding leaders in the Sid Valley are urgently on the lookout for someone to step in to watch over the area’s groups.

Read more
Fri, 11:50
Sidmouth Folkweek sign. Picture by Alex Walton. Ref shs 0636-32-14AW. To order your copy of this photograph go to www.sidmouthherald.co.uk and click on Photo Orders

And we’re off… The sun is shining as the clans gather for the summer holiday festival of 2015 and Sidmouth FolkWeek gets underway.

Read more

Local Weather

Sunny

Sunny

max temp: 19°C

min temp: 16°C

Most Read News

Great British Life


Great British Life

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

Digital Edition

Image
Read the Sidmouth Herald e-edition today E-edition


Devon's trusted business finder