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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

Tesco shoppers in Pembs called to help raise funds for food allergy charity

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SHOPPERS in Pembrokeshire are being encouraged to help an in-store fundraising campaign from Monday 22nd to Sunday 28th April to support medical research into food allergies.

For the fifth year running, Tesco is working with The Natasha Allergy Research Foundation, the UK’s food allergy charity, to help raise awareness and support clinical research into food allergies by contributing 10p from every own brand Free From product bought in stores and online, as well as providing customers with the opportunity to round up their shopping at self-service tills throughout the week.

All money raised will help Natasha’s Foundation to continue its research into reducing the risks of food allergies and further developments into the management of allergies.

In addition to the funds being raised, the campaign aims to increase awareness in Pembrokeshire about the importance of understanding food allergies and clearly highlighting ingredients in food which can cause allergic reactions.

Natasha’s Foundation was founded in 2019 by Tanya and Nadim Ednan-Laperouse following the tragic loss of their daughter Natasha who had a fatal allergic reaction to a baguette that contained sesame seeds that were not listed on the packaging.

Tanya Ednan-Laperouse OBE, said: “We’re thrilled that Tesco is supporting us for the fifth year running. Allergen awareness is so important, and money raised in previous years has helped to fund clinical research exploring the management of food allergies.”

Oonagh Turnbull, Head of Health Campaigns at Tesco, said: “The work that Natasha’s Foundation has done to date has been fantastic and we are delighted to be able to support this for a fifth year.

“There are now 175 products in our Free From range, from meals and desserts to snacks, all created with great taste but without any of the allergens. We welcome any shoppers in Pembrokeshire to try these products or kindly round up their shopping at the self-service tills to help raise money for a fantastic cause.”

Natasha’s Foundation is committed to raising awareness and funds for critical food allergy research. But the real impact of the charity’s work lies in the lives it can change.

Millions of people live with food allergies in the UK and must navigate a world where seemingly simple acts, like grabbing a quick bite to eat, can become fraught with danger. It can affect anyone, at any age.

Billie Hoque, a commercial manager for a maritime security company, from Luton, has three allergic children – Jess, aged 7, Jude, 4, and Jayde, three months.

Billie, 35, said: “Food allergies first entered our lives when my son Jess was born in February 2017. From birth, Jess was presenting symptoms of allergies, yet I didn’t know it at the time. His constant discomfort and breathing troubles led to numerous doctor visits only to be dismissed as new-mum worries, and I felt unheard and alone.

“The switch from breastmilk to formula was a turning point. After initial acceptance, Jess refused all feeds for three days. When he finally ate, he became violently ill and struggled to breathe. Calls to an emergency doctor offered little help, and when he was prescribed “thicker milk” it triggered a terrifying reaction. This was his first anaphylactic reaction, and the first time the doctor diagnosed him as having a severe milk protein allergy.

“The loneliness and isolation I felt from becoming an allergy parent were all-consuming. The family and friends who I had been closest to, quickly became the ones who made me feel the most alone. They didn’t understand or seem to take seriously what I was going through.

Billie continued: “Life changed for me in June 2021 when I found The Natasha Allergy Research Foundation. I found a community – parents united by the fight for awareness. Meeting Nadim and Tanya, who lost their daughter Natasha to allergies, laid bare the heartbreaking truth of this condition. Yet, their strength resonated deeply.

“Though every single allergy story and experience shared through Natasha’s Foundation was different, the community all had one thing in common; we understood the fear, the loneliness, and the exhaustion of the continuous battling needed to keep our children alive. This community transformed me. No longer alone, I found strength and inspiration among these incredible people.

“Today, my purpose is clear. With this supportive network and a collective voice, we can raise awareness and fight for a future free from food allergies. This journey not only saved my sons, but it has also saved me too. I’d urge everyone to support the fantastic work of The Natasha Allergy Research Foundation and their goal of making food allergies history through research and raising awareness of food allergies.

“Tesco’s Free From range offers my children a chance to be included in all the tasty treats other children enjoy. Their clear labelling on the front of the packaging is not only helpful to me but is easy enough for my 7-year-old to clearly see that a food is safe for him. This limits the anxiety he has around eating new foods.”

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Community

Cardigan Radio launches daily live broadcasts

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Cardigan Radio/Radio Aberteifi says it is excited to announce a new line up of daily live broadcasts starting every evening from 7 PM at www.cardiganinternetradio.wales. Live shows will be hosted
by founder and presenter Bobby Kelly and other dedicated volunteer members.

The Cardigan Radio stream is constantly alive with great music that spans various genres, providing something for everyone. Listeners are encouraged to tune in and experience the quality and diversity of
Cardigan Radio’s programming for themselves.

You can listen 24/7 not only through their website www.cardiganinternetradio.wales but also on platforms such as Online

Radio Box and Radio Garden.

Online Radio Box: https://onlineradiobox.com/uk/cardiganinternet/
Radio Garden: https://radio.garden/visit/cardigan/DyV8OcNC

Interested in getting more involved? Cardigan Radio is always looking
for passionate volunteers to join our team. Whether you’re keen on
presenting, handling tech, or engaging with the community, we’d love to
hear from you. Contact us at [email protected] or call
01239 543025.

Connect with us on Facebook for updates and more information:

https://www.facebook.com/groups/friendsofcardiganradio
https://www.facebook.com/RadioCardigan

Tune in to Cardigan Radio and discover your new favourite sound!

If you’re interested in being a guest on our station, whether remotely
or in one of our member’s studios, we’d love to hear from you!

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Community

Pembrokeshire’s ‘Pure West Radio’ celebrates sixth birthday

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THERE ain’t no birthday like a Pure West birthday! 

Pure West Radio – Pembrokeshire’s multi-award-winning radio station is celebrating its sixth birthday this month – and is ready to move up a gear when it starts broadcasting on DAB later this summer. 

Pure West, which now has a staff of 12, and a team of over 90 volunteers bringing news, sport, entertainment and information to the airwaves of Pembrokeshire, celebrated its sixth anniversary on April 4 – and decided to share its celebrations with its loyal listeners – giving no fewer than 1,100 of them free tickets to some top local events. 

For the Pure West Team the birthday was marked with a staff party at Seven Spice in Haverfordwest – but for listeners the treats were more varied. 

Pure West Radio joined forces with Ocky White Travel – itself celebrating a 60th anniversary – to give away a cruise holiday to one lucky winner. On April 3 nurse Ffion Thomas, from Johnston, was announced as the winner of the seven-day P&O cruise to the Norwegian Fjords. She is taking her mum along with her as a 60th birthday treat when the Iona sets sail from Southampton on May 18. 

And the giveaways didn’t stop there… Mark Edwards kindly shared 100 free tickets for a celebratory Silent Disco at Eddie Rocks, in Haverfordwest, that were snapped up within an hour – so a hundred more were released; Pure West Radio also teamed up with Hangar 5, also in Haverfordwest, and offered two one-hour free bounces for listeners, but again demand far outweighed expectations, so another hour’s bounce was provided. 

In addition, Pure West Radio joined forces with The Palace Cinema, in Haverfordwest, for a free showing of Shrek – the Movie – but, yet again, a second showing had to be booked to accommodate all those who wanted tickets. 

And sports fans haven’t been left out of the party – Haverfordwest County AFC, media partners of Pure West, have supplied 100 free tickets for the Bluebrids final home game of the season against Colwyn Bay to the broadcaster’s listeners. 

“Our birthday celebrations were immense,” said Toby Ellis, Station Manager, “We gave away 1,100 free tickets to local events to make sure our dedicated listeners and followers were able to join in the party… putting a smile on the faces of more than a thousand Pembrokeshire people. 

“And while the birthday celebrations are winding down – Pure West Radio – the only radio station based in Pembrokeshire – is gearing up for the next phase in our story. 

“The licence for DAB broadcasting is in place – and we hope to go live within the next few months. 

“We’ve expanded our staff and are currently looking for a full-time show producer – so anyone interested should email [email protected] to find out more, and we have some new sponsors – Ocky White Travel is now the official sponsor of Pure West’s daytime show and Folly Farm sponsors the breakfast show. 

“And we’ve teamed up with yet more Pembrokeshire businesses who are taking advantage of our huge reach to spread their message across the county. 

“There really is something for everyone on Pure West Radio – tune in via app, smart speaker and check out our website for the latest going on in Pembrokeshire, he added.” 

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