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Brave Teddy highlights need for ‘Gift of Life’

Thomas Sinclair

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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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Ray’s Renal Ray of Sunshine Run

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LYNDON and Alfie-Ray Rees from Llanelli had set themselves a challenge of running an Ultra Marathon, “Ray’s Renal Ray of Sunshine Run” on May 29 2021 in memory of Raymond Bolton a “larger than life” character that would always bring light and happiness wherever he went. 

A Llanelli man who doted on his family and was loved and respected by so many.

Ray worked down the mines in Cynheidre as an electrician and loved nothing more than building and flying model aircrafts in his spare time.

Ray made such an impact on everyone’s lives. A father figure to his niece, due to their close relationship she named her youngest son, Alfie-Ray. As a mark of respect Alfie-Ray, aged 12, wanted to run an Ultra Marathon of 31 miles on May 29 2021 for the Renal Unit that supported Ray through his treatment. 

All the staff at the unit could not speak highly enough of Ray, he was so full of sunshine and laughter he made a lasting impression on everyone he met. Ray sadly passed away in March this year and Alfie-Ray wishes to honour his memory.

Lyndon and Alfie-Ray Rees (12 years of age) completed the Ultra Marathon in 6 hours, 32 minutes and 40 seconds. The run started and finished at Llanelli Leisure Centre.

The first part of the route involved running from Llanelli Leisure Centre along the coastal path to Pembrey, before running back to Llanelli Leisure Centre.

The second part of the route took them up the Path of Doom which is the old Mynydd Mawr Railway Line in Cynheidre before reaching Tumble and this was the turning point before they made their way back to Llanelli Leisure Centre to finish the run.

The weather was kind to us on Saturday and what a special way to remember and celebrate the life of the much-loved Raymond Bolton. This father and son partnership faced this epic challenge head on and their determination and self-belief allowed them to achieve their goal.

Furthermore, the charity’s motto is “Believe in Yourself, both Lyndon and Alfie–Ray are shining examples of what you can achieve if you put your mind to it.

Alfie-Ray, Anna Powell and Lyndon

Organisers would like to say a huge thank you to Llanelli Leisure Centre, First in Events, Daisy’s Little Coffee Shop, Picton Sports, Waunwyllt Inn, Hidden Carmarthenshire, Morrisons Llanelli, and Glangwili Hospital for all their donations and support for the Ultra Marathon.

The cheesecake at Daisy’s Little Coffee shop was a much needed sugar boost on the Ultra Marathon Route which fuelled Lyndon and Alfie-Ray to complete the run in record time.

Alfie-Ray, aged 12, said: “I was very nervous building up to the event and I knew it was a huge challenge. I started well and I felt strong but as the miles racked up so did the fatigue.

“The last 3 miles were the hardest it took all my mental strength to finish, but I was not going to let “Uncle Ray” down. Although I was visualising what I would be eating at the end of the race I was so exhausted I couldn’t eat my food. After a good night’s sleep, I more than made up for it the following day”.

Lyndon, father of Alfie-Ray, said: “Needless to say, I am very proud of Alfie-Ray and all of his achievements, however this takes it to another level. Alfie- Ray had a very good idea of what discomfort was ahead of him, but he dug deep and pushed on.

“Even I was shocked with the ease in which he covered the 31 miles”.

Anna Powell, Children and Youth Community Engagement Officer, said: “It has been an absolute pleasure to work with Lyndon, Alfie-Ray and the Rees Family.

“I am in awe of Alfie-Ray completing an Ultra Marathon at the age of 12, because the majority of adults would not even attempt it. Uncle Ray would be so proud of his achievement and what a positive way to remember him and celebrate his life”.

Lyndon and Alfie-Ray would like to thank everyone who has donated to date and they have raised £610 (and counting). It will make a huge difference to the Renal Unit in Glangwili Hospital.

There is still time to donate to this fantastic cause please click the link below : https://localgiving.org/fundraising/RaysRenalRayofSunshineRun/

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Llanelli fitness group thanked for NHS donation

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HYWEL DDA HEALTH CHARITIES has thanked Arumba Llan, a not-for profit fitness group based at Llangennech Rugby Club, Llanelli.

The club has over 60 members and has donated £2,500 to Hywel Dda Health Charities, the official NHS charity for Carmarthenshire, Ceredigion and Pembrokeshire. The money will be used to support the Intensive Therapy Unit (ITU) at Prince Philip Hospital.

NHS staff receiving the cheque

Over the 9 years it’s been running, Arumba Llan has raised approximately £70,000 through weekly classes held at Llangennech Rugby Club. 

They are a non-profit organisation and all the money raised from running classes, along with various charity events and theme nights, is donated to good causes.

Managing Director and instructor Nia Gibbs said, “2020 was a very difficult year for us as for every charity. We relied on kind donations from the girls who participated in live classes on Facebook with me and the few months of actual classes we’ve managed to have. Despite this, we decided this year to donate £2,500 to the ICU in PPH as a way to thank the NHS for their wonderful work, in particular to PPH, as we like to support local causes in Arumba Llan.” 

“Teresa Owens helped me with deciding where the money was most needed. I only knew that I wanted the money to help with COVID in some way. She is a wonderful human being along with a massive gang of ladies who support me.” 

“I believe these funds are greatly required by the hospital and it is a chance for Aumba Llan to thank the tireless work of the staff and a tribute to their selflessness during this precarious climate.

“It is also of great pride that we have members of Arumba Llan who are employees at PPH.”

Catherine Cole, a Sister in Prince Philip ITU said “We would like to thank the Arumba Llan for the very generous donation. It will be used to benefit the ITU providing services and activities above and beyond core NHS expenditure such as extra patient comforts, the most up to date medical equipment, more welcoming surroundings, staff training, development and wellbeing initiatives and enhanced care. Thank you”

To find out more about Hywel Dda Health Charities go to hywelddahealthcharities.org.uk. 

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Burry Port residents urged to pool ultrafast broadband vouchers

Thomas Sinclair

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OPENREACH is asking people living in Burry Port to get behind a push for faster broadband.

Ultrafast, ultra-reliable full fibre broadband is within touching distance for people living in Burry Port – thanks to Openreach’s Community Fibre Partnership scheme.

The company – the UK’s largest broadband network used by customers of BT, Plusnet, Sky, TalkTalk, Vodafone and Zen – is urging people living or working in Burry Port to consider pooling Gigabit broadband vouchers available from the UK and Welsh Governments to help build a new, gigabit-capable network, where fibre is run directly from the exchange all the way to each property.

Many residents have already pledged their support, but those who haven’t and don’t currently have access to a 100Mbps broadband service can check if they qualify and pledge their voucher on the Connect My Community website.

If enough people come forward to pledge, and validate their vouchers – before the scheme ends – Openreach can work with the community to build a customised, co-funded network and bring full fibre broadband to areas not included in any existing private or publicly subsidised upgrade schemes.

By working with Openreach in this way, more than 150,000 homes and businesses across the UK can already benefit from ultrafast, ultra-reliable broadband.

Connie Dixon, Openreach’s partnership director for Wales, said: “This is a really exciting opportunity for the community of Burry Port to bring full fibre infrastructure to the town but the clock is ticking.”

“Deadline for vouchers to be pledged and issued is the end of March so we need as many people as possible in Burry Port to get involved so that we get enough pledges ‘over the line’. Everyone who pledges a voucher will be doing their bit to help make Burry Port one of the best-connected places in Wales. Pledging couldn’t be simpler, but we need residents to act quickly.”

Connie added: “Thousands of homes and businesses across Wales can already upgrade to the Openreach full fibre network and local people can use our online postcode checker to see what’s now available.

“We’re investing £12 billion to build full fibre broadband to 20 million homes – and more than three million of those will be in the toughest third of the UK – but we can’t upgrade the whole country alone. This latest support from government, alongside help to remove red tape and barriers that slow down the build, is vital.”

To claim vouchers which contribute towards the cost of building the new network, residents are asked to commit to ordering a full fibre service from a provider of their choice for at least 12 months once the new network is available.

Eligible residents can qualify for up to a maximum of £3,000 while small to medium sized businesses can claim up to £7,000 under the UK Government’s Gigabit Broadband Voucher Scheme which has been topped up by Welsh Government funding.

Carmarthenshire County Council leader, Cllr Emlyn Dole said: “We welcome this scheme and would strongly recommend residents and businesses in Burry Port seeking ultra-fast, ultra-reliable internet speeds to register their interest now. Fast, reliable connectivity is vital to support business growth, help communities to thrive, improve health and well-being, and make it easier for people to get online and access public services. This has been particularly highlighted during the current Covid-19 pandemic.”

Full fibre technology provides more reliable, resilient and future-proof connectivity; meaning fewer faults; more predictable, consistent speeds and enough capacity to easily meet growing data demands. It’s also future-proof, which means it will serve generations to come and won’t need to be upgraded for decades.

Fibre optics – strands of glass around one-tenth the thickness of a human hair – transmit data using light signals. Fibre is smaller, lighter and more durable than copper cabling and less vulnerable to damage. This short video explains what full fibre technology is and there’s more info here.

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