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Brave Teddy highlights need for ‘Gift of Life’

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Adam Hughes: Just after his transplant.

Adam Hughes: Just after his transplant.

FOR Jess Evans and Mike Houlston from Cardiff, the birth of twin boys Teddy and Noah on April 22 2014 was one of both heartbreak and hope. Teddy was born with a rare yet fatal condition – anencephaly – but his parents were determined his short life would not be in vain. Once the diagnosis was confirmed during pregnancy, the parents discussed and wanted, if possible, for his organs to be donated. The family managed to spend precious time with him before he passed away and Teddy became the youngest organ donor in the UK. In the last ten years, 39 babies younger than two years old have become organ donors helping to save the lives of strangers.

As his twin Noah celebrated his first birthday the family used the anniversary to mark the occasion when his brother Teddy became a hero. His kidneys were transplanted to help save the life of another person.

Jess, 28, said: “Knowing that part of your loved one is living on in someone else is comforting. If it stops any other person going through the same thing then this can only be good. Teddy´s life had a very important role to play. Unless you have been through the same thing or know someone affected it´s hard to understand how important organ donation is.”

Mike, 30, added: “We want Teddy´s story to inspire others and help break any taboos people might still hold regarding organ donation. Organ donation wasn´t prominent in my life growing up and while I was up for it I never got round to doing anything about it. I´m sure there are many more men like me who think the same! I want to spread the word as much as possible about how organ donation saves lives, and that we should all speak to each other about our wishes. Without that discussion it is a very difficult conversation to have when it comes out of the blue. Put simply, you should ask yourself the question “Would you take an organ if you needed it?” Everyone would do so if the truth were told so we hope what Teddy did can educate people and prompt them to get talking.”

April 22 2015, the one year anniversary of Teddy’s heroism, was also a personal milestone for myself, it marked six months to the day since I received my kidney transplant and got to experience first hand the ‘gift of life’. In April 2013 I was admitted to hospital with symptoms of cramps, breathlessness, headaches, nosebleeds and chest pains. A simple blood pressure test at the doctor’s surgery had indicated a blood pressure reading of 230/170, high by anyone’s standards, but stratospheric for a 25 year-old.

This was the start of a three week stay in hospital. I had suffered Chronic Renal Failure, my blood readings were so dangerously unbalanced that I was told I may not have survived a fortnight longer. My blood pressure had been so high for so long that my heart’s muscular walls had doubled in size, I was seriously ill. Although I knew I hadn’t been feeling right for a few months, my decline from being a fit and healthy individual to being registered on the transplant waiting list was swift.

For nearly two years I was in a daily routine of medications, injections and ten hours of dialysis which took place overnight. I was unable to eat almost all of the food I liked and travel, which had been one of my main interests, was made almost impossible through the sheer amount of equipment and supplies I would have to take with me in order to survive.

For me the only option was a transplant and with an average waiting time for a kidney of between three and five years I was incredibly fortunate to have received a match in just under two years. I am one of the lucky ones and the need for donors has never been more urgent. More than 8,000 people in the UK need an organ transplant. Despite the huge advances in medicine and the great success of transplant operations, people are still dying while waiting.

There is a critical shortage of organs and the gap between the number of people waiting for a transplant and the number of organs donated is increasing. One donor can save the life of several people, restore the sight of two others and improve the quality of life of many more. The more people who pledge to donate their organs and tissue after their death, the more people stand to benefit.

In a recent survey 90% of people said they supported organ donation and almost everyone would accept a transplant if they or their loved one needed one. Yet only a third of people in the UK have registered to be an organ donor. Last year, over 40% of families refused to allow organ donation to go ahead, sometimes even when their loved one was a registered donor.

In September 2013 the Welsh Assembly passed what it described as it’s ‘most significant’ legislation to date. From December 1, Wales will be the first UK country to introduce a soft opt-out system for organ and tissue donation. The new law aims to make it easier for people in Wales to become organ donors. From this date, if you have not registered a decision to opt-in or opt-out of organ donation, you will be treated as having no objection to being an organ donor. This is called deemed consent. Thus meaning that if you did not want to donate your organs then you would have to ‘opt-out’.

In 2012/13, 36 people died in Wales whilst waiting for an organ transplant as a donor could not be found. In 2011/12 30,000 people died in Wales. Around 250 of these died in a way that would have allowed them to become a potential organ donor. But only 67 people became organ donors. Through the ‘opt out’ legislation it is hoped that waiting times for people requiring organ transplants and the number of preventable deaths can be reduced significantly.

It is rare for families to be in the awful situation where their loved one could be a potential donor. In 43% of cases where organ donation is possible, families say no to donation because they don’t know whether their loved one wanted to be a donor. When the new system is in place, families will know their loved one could have opted out if they didn’t want to be a donor. Therefore by proceeding with organ donation, they can be reassured that they are carrying out the decision of their loved one.

The law will mean if you support organ donation but simply haven’t got around to signing the Organ Donor Register, you won’t need to. As someone who has experienced first hand the positive impact organ donation can have upon a person’s life, the law change is an extremely positive move. Despite this I would still encourage people to sign up to be an organ donor. My message is a simple one: if you would accept an organ, surely you should be prepared to be a donor. Sign up to the NHS Organ Donor Register and tell your relatives that you want to donate. You can do this online by following the links on http://www.organdonation. nhs.uk or by calling 0300 123 23 23.

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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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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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