Connect with us
Advertisement
Advertisement

Community

Seizure death inspires awareness campaign

Published

on

Epilepsy Action UK receives £159,300 from the Big Lottery Fund: Llinos Williams raises awareness for the condition which killed her brother at the age of 18

Epilepsy Action UK receives £159,300 from the Big Lottery Fund: Llinos Williams raises awareness for the condition which killed her brother at the age of 18

THE TRAGIC death of a teenager from an epileptic seizure sparked his sister to support an awareness-raising campaign for his condition.

Llinos Williams spent years trying to come to terms with the tragedy of her brother’s untimely death before she too was diagnosed with the same condition as him.

She reports that her diagnosis made her even more determined to support Epilepsy Action Cymru, who recently welcomed the news that they were chosen to receive £159,300 from the Big Lottery Fund.

The grant money will be used to improve access to information about epilepsy at different stages of care.

30-year-old Llinos Williams from Pwllheli was diagnosed with epilepsy following her having a seizure in her workplace.

The realisation that she’d been diagnosed with such a dangerous condition, especially one which had devastated her family the way it had, shocked her due to the fact that she had absolutely no idea that she was suffering from it.

Llinos said: “One of my brothers, Dylan, passed away after having a seizure when he was just 18-yearsold in 2007. It was such a huge shock to the family as even though we knew he’d had epilepsy for about ten years, we didn’t know that people could die from it.

“I was diagnosed with epilepsy in 2012 after I’d had a seizure in my work place. After visiting my GP I later found out that it had been triggered by an infection.

“I was really scared because I was just thinking about what had happened to my brother, and to add to everything else as well I was scared for my other brother, Carwyn, who had been diagnosed in 2010 too.

“I had no idea that I had epilepsy for a long time, I had no problems at all when I was a teenager but that first seizure turned everything around.”

However, with the support of Epilepsy Action Cymru, Llinos and her family have managed to overcome many of the challenges that they face and are now championing awareness of the condition and helping others to learn more about it.

“Thankfully I’m really healthy now. I was lucky enough to find out about Epilepsy Action Cymru shortly after I was diagnosed and they have been so helpful with getting not just me, but my family to come to terms with my condition.

“Through them I’ve become a volunteer to raise awareness of the condition and give people advice on how to manage it, and have even spoken at conferences about my experience.

“It’s fantastic that the Big Lottery Fund has awarded this money to Epilepsy Action Cymru. The work that they do to help people like me is brilliant, and it’s important to be able to provide that support to as many people as possible.”

Ann Sivapathan, Wales Manager at Epilepsy Action Cymru, said: “We are delighted to receive this grant from the Big Lottery Fund.

“The money will allow us to provide a vital service to the 8,000 people living with epilepsy in Wales in the language they feel most comfortable with.

“We will be able to give accessible support and information, provide a voice for people with epilepsy on important healthcare issues and limit the social isolation felt by some people with epilepsy in this area.

“We believe this role will be a real lifeline for many people living with epilepsy in Wales.”

There are 13 other projects across Wales which have been granted a share of the £3,881,083 ‘People and Places’ funding from the Big Lottery Fund.

Leonard Charity Disability will be using £498,960 to expand their ‘Can Do’ programme from Cardiff, Newport, Swansea and Wrexham into more of Wales.

It is hoped that this expansion will offer 1,200 more young disabled people volunteering opportunities on community projects that will enhance their life skills and levels of independence, and ultimately break down social barriers that they face in day-to-day life.

Michelle Impanni, Senior Programme Coordinator for Can Do in Wales, said “We are delighted we can now develop the programme to reach even more young people across Wales to benefit from this volunteering programme.

“Can Do aims to support and equip our participants with the skills and confidence they need to live their lives fully and participate in society.”

Time to Change Wales, which is a partnership between Mind Cymru, Gofal and Hafal, have managed to secure funding from the Big Lottery Fund to deliver a brand new antistigma campaign for children and young people.

Antony Metcalfe, Programme Manager of Time to Change Wales, stated: “We are delighted to have secured funding from the Big Lottery Fund to deliver a brand new antistigma campaign for children and young people.

“We are really pleased to have the support of schools and teaching professionals across Wales and look forward to working with them to improve the lives of young people.

“It is crucial that action to improve mental health and reduce discrimination starts at a young age and we believe that this campaign will play an important part in this agenda.”

The People and Places programme seeks to award grants of between £5,001 and £1 million for a broad range of different community projects.

Highlighting the importance of this, Rona Aldrich, Wales Committee Member for the Big Lottery Fund, said: “Programmes like People and Places are making a difference to the lives of so many people in communities across Wales.

“It delivers on our promise to use National Lottery funding to regenerate and revitalise communities, tackle disadvantage head on and leave a lasting legacy.”

Continue Reading
Click to comment

Leave a Reply

Your email address will not be published.

Community

Ambitious community project to capture untold stories from across Pembrokeshire

Published

on

MILFORD HAVEN’S Torch Theatre is launching ‘The Pembrokeshire Story’, an exciting new community project that aims to connect people across generations in celebrating the Pembrokeshire spirit.

We all love a good story, but they are especially good if they throw light on the place that we are from. The Pembrokeshire Story is trying to bring local artists and our community together by mapping the county through everyday stories told by the people who live here. A story might be something as simple as how life has changed over the years or it might be a special event that you would want to remember. So often these stories remain as legends within our own families, but this is a chance to share them with the world. Everyone has a story to tell and this project will facilitate these stories to be recorded and remembered for generations to come.

The inspiration behind the project originated from the Torch Theatre’s Artistic Director, Peter Doran, who, whilst caring for his father who was suffering with Covid-19 at the start of the pandemic in 2020, encouraged his father to elaborate on stories which previously he had only touched on in passing.

Peter said: “My father told us of his time as an evacuee, having been sent from his home in Liverpool to the Welsh speaking village of Llamberis in North Wales. It was a fascinating tale and one that we might never have heard about had it not been for Covid-19. We’re all so busy, I feel we just don’t spend enough time with each other to allow these wonderful moments to happen, we’re all so busy it would seem.”

Peter’s father has thankfully gone on to make a full recovery from Covid-19 and is continuing to tell many more stories.

The Pembrokeshire Story is being led by Tenby based creative James Williams, who has assembled a team of freelance artists to capture extraordinary stories in different mediums from across the county. These stories are only part of the project and the Torch Theatre requires your help to capture your stories told across the generations.

James added: “Local artists have already been working to gather stories from over the county, and now we’d like to ask you to join in. We are putting out a call for videos made by young people where they interview their grandparents or older relatives about their experiences and stories of Pembrokeshire. These videos will be added to an online Living Archive which will be available for anyone to access.”

All the stories submitted will be added to the Living Archive on the Pembrokeshire Story website which will be launched in April. Videos can be made on a phone or recorded from a digital platform call (ideally filmed in landscape), they can be in English or in Welsh but must be no longer than 5 minutes.

If you would prefer not to film your submission, we would be happy to receive your story as an audio recording (mp3 format) or in writing, with an accompanying photograph.

For more information visit https://www.torchtheatre.co.uk/the-pembrokeshire-story/

If you would like to submit a story, please contact James Williams via this email address marketing@torchtheatre.co.uk

Continue Reading

Community

NHS worker from Pembroke Dock raises over £1,550 in a sponsored challenge

Published

on

An NHS worker from Pembroke Dock has raised over £1,550 in a sponsored challenge with her husband Edd, having been inspired by the support their young niece received as a baby at Glangwili Hospital Special Care Baby Unit.

Donna Reed works in the Communications Team at Hywel Dda University Health Board and wanted to do her bit to say thanks to everyone who nursed Layla and supported the family for several weeks when she arrived very early in 2012.

Donna says, “Born at just 3lbs, Layla is now a beautiful, bubbly and full of beans eight-year-old. As a family we’d like to give something back to the staff who cared for Layla when she was so tiny.”

Donna and Edd raised over £1,000 on a JustGiving page and a donation of £500 was made by Edd’s employer, Valero Energy Ltd, where he works as a Process Operator.

Karen Jones, a Senior Nurse thanked the couple for their efforts. She said, “We really appreciate what Donna and Edd have done to support us. Donations like this are used to purchase items for parents and babies in order for their stay to be more comfortable and to help make the stay less stressful – items such as parent pamper packs, items for the parent’s sitting room and overnight room baby’s journal, items to support breast feeding and items to support premature babies development. They are also used to support specialist neonatal training for staff and purchase specialist neonatal equipment.”

Donna and Edd are planning a series of physical challenges through the year. Donna adds, “A year on since I started fundraising for Glangwili Hospital’s SCBU, and after all but one of my events last year were postponed, I decided to take on a very unique challenge to raise another £100 to get to my target.

“I ran the Narberth Nobbler’s 4 x 4 x 48 challenge between March 5-7. The event involved me and Edd running 4 miles every 4 hours for 48 hours, a total of 48 miles over the weekend. This is an incredibly tough endurance event that will test our stamina, perseverance and mettle.”
Layla’s mother Rebeca said, “As Layla was born prematurely it was a very worrying time, however we knew she was in the best hands in SBCU as they built her up to a healthy weight and did everything they could to reassure us as parents.

“We are so grateful for the care and support that staff gave to Layla and to our family, and to my sister and Edd for raising money for the unit.”
Donna also plans to take part in Broad Haven Triathlon, Cardiff Half Marathon and Snowdon Marathon Eryri, providing they go ahead.
Donna would like to thank everyone who’s supported her fundraising so far and is encouraging people to donate if they can, “Any amount, no matter how small, will help make a difference and 100% of funds raised will go towards helping babies like Layla and their families,” she says.

Continue Reading

Community

Great Western Railway and the Fishguard Ocean Port – How WWI dashed ambitious plans for Fishguard

Published

on

by Doug Evans

ALTHOUGH Fishguard Port is best known now for its easy route to Ireland, it was once part of an ambitious plan to take trans-Atlantic passengers away from the likes of Plymouth and Southampton.

In 1889, the Great Western Railway rook over the North Pembrokeshire and Fishguard Railway, and in preparation of turning Fishguard into a purpose-built ocean liner port, the GWR opened its first station, Fishguard & Goodwick railway station, in 1899 while work on the new port began with the construction of Fishguard Harbour’s East breakwater.

The overlooking village of Harbour Village was built to accommodate workers and the necessary 27 acres site and 900 metre breakwater were provided by blasting 1.6 million tonnes of rock from the cliff face.

A new line would connect the proposed liner terminal on the East Breakwater to the West Wales line. The new 2 mile route, which would have bypassed the steeper gradients and curves on this part of the original line, would have included a deep cutting, embankments and two tunnels.

However, the project to build a breakwater and an ocean-going terminal was abandoned after it became clear silting (which could not be prevented by dredging) would stop large ocean-going ships from using the port.

Local legend has it that the engineer responsible for this mistake committed suicide after realising the port was not suitable for its intended purpose. Another local myth suggests that the breakwater was deliberately built this way as locals didn’t want the harbour to become too large.

The East Breakwater was left unfinished. Two short sections of the planned railway to the new port terminal were completed before the project was ended.

In 1906, Fishguard and West Wales was visited by the largest ship in the world at the time the RMS Mauretania.

Fishguard Harbour, from above

An archived pamphlet for the Fishguard Port from 1913 provides a fascinating insight into the journey from America to London at the time.

It reads: “Fishguard is situated on the south-west coast of Wales, and is the nearest British port to New York used by Atlantic liners. It affords the quickest means of reaching London, and is also a convenient port for the Continent.

“In addition, many parts of England and Wales are within easy access of Fishguard; the Metropolis is 262 miles away and this distance is covered in under five hours.

“Tickets for seats in the special train from Fishguard to London will be furnished to Saloon passengers holding railway coupons. Passengers who do not hold coupons can purchase same at Purser’s Office before leaving the steamer.

“Single tickets and outward halves of return tickets between Fishguard and London are available for three months if purchased in America, or if issued in exchange for vouchers obtained in America. In other circumstances they are available for ten days.

“The baggage of London-bound passengers is ready labeled, “London, via Fishguard,” the lettering being white on a purple ground, the bold lettering and the distinctive coloring precluding the possibility of confusion.

“The route from Fishguard to London, passing through the industrial centres in South Wales and the charming scenes of the Thames valley, is full of interest.

“The speed at which the run is covered is the most potent tribute to the excellence of the Great Western’s iron road and their rolling stock.  Only one stop is made, and this of a very short duration, at Cardiff.

“Between the Fishguard of today and that of even a decade ago there is a great difference. A bay which boasted but of a departing or rather departed fishing industry, and was visited by only a few coastwise traders and fishing craft seeking shelter, has been converted into a splendid harbour, a harbour in which great natural advantages have been ably supplemented by the works which the Great Western Railway Company have constructed.

“At the quay by the railway station the splendid fleet of turbine steamers running between Fishguard and Rosslare (Ireland) are berthed, and here are the most modern appliances for the speedy transfer from ship to train, or vice versa, of goods and baggage.”

Although the ambitious plans for Fishguard were not to be, the Port continues to this day, providing crossings to Rosslare with the Superferry Stena Europe providing two daily crossings all year round.

Transport for Wales operate from Fishguard Harbour and have special trains to connect with the arrival and departures of the Stena Line Superferry Stena Europe that operates to/from Rosslare.

Continue Reading
News1 hour ago

Multi-agency response to house fire in Siskin Close, Haverfordwest

FIRE crews are attending a domestic fire in a property on Siskin Close, Haverfordwest. As of 11.45pm on Monday evening...

News5 hours ago

Outdoor hospitality given go-ahead and rules on mixing outdoors relaxed in Wales

SIX people will be able to meet outdoors in Wales from Saturday 24 April while outdoor hospitality will be allowed...

News8 hours ago

Police ‘enforcement and engagement’ to curb anti-social behaviour in Tenby

POLICE in Tenby will be using enforcement and engagement in a bid to curb future incidents of anti-social behaviour, they...

News11 hours ago

Press gagging order granted in James Oulton case by Crown Court judge

THE CROWN COURT judge presiding over the James Oulton trial has issued a reporting restriction to the press, which local...

News15 hours ago

Six-year-old girl raises the alarm to a property fire

MID AND WEST WALES FIRE AND RESCUE SERVICE wish to thank six-year-old Mia, of Milford Haven, for her calm and...

News1 day ago

Tenby left ‘strewn with rubbish and smelling of urine’ after hundreds party

TENBY was left with empty cans, broken bottles and fast food wrappers strewn everywhere, after over two hundred young people...

News2 days ago

Protest against ‘draconian’ Police and Crime Bill takes place in Haverfordwest

A SECOND Kill the Bill protest took place in Haverfordwest on Saturday (Apr 17). One of the organisers told  The...

News4 days ago

Approval recommended for dockyard plans

A CONTROVERSIAL plan to develop part of Pembroke Dock’s Royal Dockyard comes before the County Council’s Planning Committee next week. Despite many...

News4 days ago

Primary school teacher would ‘moan’ as he touched female pupils, court hears

A HAVERFORDWEST primary school teacher would “moan” while he touched his female pupils in a sexual way, a witness said...

News4 days ago

Golden goodbye report likely to be critical

A REPORT by Audit Wales into the departure of former CEO Ian Westley is very likely to contain criticism of...

Popular This Week