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Pioneering eye surgery offers hope for Lloyd

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fundFUNDRAISING is underway for 22-year-old Saundersfoot local Lloyd Davies, who desperately needs pioneering eye surgery in the United States who lost his eyesight after being diagnosed as suffering from Lebers Hereditary Optical Neuritis (LHON).

Led by Professor John Guy, the gene therapy treatment is the first in the world that could potentially cure LHON and fundraising is now well underway to help Lloyd raise the £10,000 he needs in order to make the trip to the USA and stay out there for the duration of the treatment.

The former Greenhill School pupil had aspirations of joining the Royal Navy to become a Navy Diver, and whilst he was waiting to complete the final parts of the admissions process, he enrolled onto the Marine Biology course at Swansea University.

In November 2013 Lloyd’s world was turned upside down when he began to suffer from a slight blurring of vision in his left eye. After putting up with it for a short period, he decided to go for an appointment at his local ophthalmic optician, who immediately referred him to the Ophthalmic Department at his local hospital who began to run tests to discover the cause of his sight issues.

By Christmas 2013 Lloyd had lost all vision in his left eye within just a month of first noticing any problem at all. By January 2014 he was given the devastating news that the cause of his sudden blindness was that he was suffering from LHON, and that usually the other eye would be affected within a matter of months.

This proved to be correct, as shortly after diagnosis Lloyd started to lose the sight in his right eye. By August 2014, shortly after celebrating his 21st birthday he was declared as being legally blind.

The condition has robbed the fun loving, sports mad individual from doing all the things he enjoys and has prevented him from pursuing the career of his dreams. It is hoped that the treatment will restore Lloyd’s vision and help him to pursue his ambitions in life.

Lloyd told The Herald about how the condition has affected his life and how grateful he is to those who have started the fundraising account and also to his family and friends who have helped him through this difficult period in his life

“When I was 20 years old, I lost my sight to a genetic disease called LHON (Lebers Hereditary Optical Neuritis). It took less than 5 months from having 20/20 vision to being registered as blind. Up until then I had lived the life of any normal lad growing up my age, being able to drive, play rugby, scuba dive and travel like anyone else takes for granted.

“The Summer before I lost my sight it worked at a Summer Camp in New York as a wakeboard instructor – something I now can’t do as I don’t think a blind person would be too safe driving boats!

“After I got back from Summer Camp I was in the process of joining the Royal Navy, something I now can’t accomplish.

“Once I was registered blind, there were life choices taken away from me – one of the biggest ones being my ability to drive – something I took for granted until I had to rely on buses, taxis, trains and lifts from other people.

“Later in September 2014 I joined the RNC (Royal National College for the Blind) in Hereford where I studied as a personal trainer in year one and currently doing massage in my second year, where I am still learning how to live with such limited sight.

“Since this all happened, everyday tasks have become daunting and tricky. Something as simple as finding the coffee to make a drink or trying to find something that has been moved by someone else.

“As trivial as it sounds, little things like having to take a picture of what other people are looking at, just to be able to enlarge and zoom in, just to try to see for myself. One of the things I now hate doing is going out for a meal, because even having to have the menu read out and chasing food around the plate becomes embarrassing.“

Regular everyday activities that people do without a second thought have become a chore for Lloyd and he explains that the surgery in America is his only chance to restore normality in his life, and that it is potentially not only himself that will be affected as there is a 50/50 chance of his younger brother also having the condition:

“As a result of the changes and difficulties that I’ve encountered I have been lucky to have such amazingly supportive family and friends that have helped keep my hopes up for future treatment and this opportunity to go to America for the trial is not one that I can afford to miss.

“The gene therapy treatment that is being trialled in the States is the first in the world to potentially cure my condition. “

“It is not just me has been affected by this as my younger brother has the same gene mutation and has a 50/50 chance of going blind too. Other members of my family also have the chance of being affected.

“As a result of this opportunity coming along, I will have to travel to and stay in America with someone coming with me and live there for 3/4 months whilst the trial is being carried out.

“I need to raise funds as quickly as possible is the trial is expected to start in the next few months.”

You can help Lloyd to get to the States and undergo treatment by donating via the ‘Light for Lloyd’ fundraising GOFUND ME page online, by typing the following link into your browser: https://www.gofundme.com/e8pte9xm

Alternatively you can search online for ‘Light for Lloyd’ and follow the links to donate, or go to social media site Facebook and search ‘Light for Lloyd’.

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Community

Ambitious community project to capture untold stories from across Pembrokeshire

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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

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Community

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

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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.

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Community

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

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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.

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