Community

Pioneering eye surgery offers hope for Lloyd

Published

8 years ago

February 26, 2016

fund FUNDRAISING 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 21^st 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’.

Community

Port of Milford Haven renews partnership with Milford Youth Matters

Published

1 hour ago

April 25, 2024

Tom Sinclair

THE Port of Milford Haven has strengthened its commitment to supporting the development of young people via a renewed partnership agreement with Milford Youth Matters. The two organisations have been working in collaboration for over five years to improve skills, aspirations, confidence levels and positive experiences for young people in Milford Haven. The new three-year agreement will enable Milford Youth Matters to deliver Friday night youth provision at a new venue based in Haven’s Head Business Park.

The partnership between the Port and Milford Youth Matters has resulted in hugely successful youth projects including the award-winning Under the Bridge project, WAVE – a water-safety initiative – and Winter Warmers, which provided young people with free meals and a warm space to socialise in a safe environment. All projects are supporting young people to achieve their full potential with many learning new skills, gaining qualifications and taking up volunteering activities. They have also led to a decreased anti-social behaviour in the area.

The new premises at Haven’s Head will allow Milford Youth Matters to expand their current offering and focus more on their academy work, which includes upskilling young people.

Dayle Gibby, Co-Ordinator at Milford Youth Matters said: “Its fantastic that the Port of Milford Haven shares our vision in providing ongoing opportunities for young people in our community. By working together we are able to align our resources to ensure that young people are provided with experiences that will enhance their future potential, whether that be employability, volunteering or to become active members of our town. Our ongoing and enhanced partnership looks to ensure the maximum impact is achieved with long lasting benefits for our future generations.”

Lauren Williams, PR & Communications Officer added: “We’re lucky to have organisations like Milford Youth Matters on our doorstep, offering young people creative outlets and skills opportunities. Our partnership over the past 5 years has gone from strength to strength and we are delighted to be able to increase our support over the coming years.”

Community

Castle tearoom serves up new sensory-friendly sessions

Published

2 hours ago

April 25, 2024

Tom Sinclair

NEW sensory-friendly sessions at a popular castle tearoom will enable visitors with additional needs to enjoy a welcoming and accommodating environment tailored to their specific requirements.

As part of an initiative to boost engagement with a more diverse audience, Carew Castle, which is run by the Pembrokeshire Coast National Park Authority, will be running a new Quiet Hour and Power Hour at Nest Tearoom on the second Monday of each month.

The Quiet Hour, designed to provide a safe space for anyone who feels anxious or overwhelmed when out in public, will take place between 9am and 10am, before the Castle opens. Bright lighting and noise will be kept to a minimum and visitors will be able to enjoy quieter activities in a relaxing environment.

The Power Hour is scheduled for 4.30pm to 5.30pm and offers an energetic and engaging session, tailored to promote physical movement and social engagement. The aim is to create an opportunity for individuals who thrive in more active settings to connect with others, without concern for excessive noise or social interaction.

Manager of Carew Castle, Daisy Hughes, said: “We are thrilled to introduce these new sensory-friendly sessions at Carew Castle, as part of our ongoing commitment to accessibility and inclusivity.

“The Quiet Hour and Power Hour sessions aim to cater to the specific needs of our visitors, providing them with an environment where they can truly be themselves. As well as being able to use the café facilities, visitors will be able to explore the Castle garden. For those who wish to explore the Castle, entry is free with a Carers Card. Otherwise, normal entry fees apply.”

The Castle, which was named Pembrokeshire Visitor Attraction of the Year in last year’s Croeso Awards isn’t the only Park Authority-run site to adapt the visitor experience to accommodate more diverse audiences. A Sunday morning Quiet Hour was introduced at Castell Henllys Iron Age Village in 2019 to encourage people who would not otherwise have visited the site to come along and discover more about the lives of their ancient ancestors.

To learn more about the sensory-friendly sessions and to plan your visit, please contact Carew Castle directly on 01646 651782 or visit www.carewcastle.com. Further information about Castell Henllys’ Quiet Hour can be found at www.pembrokeshirecoast.wales/castell-henllys/about-castell-henllys/accessibility-2/.

Community

Four-day community engagement at Haverfordwest Castle Square

Published

2 hours ago

April 25, 2024

Tom Sinclair

THOMAS Baden Tudor, Chairman of Pembrokeshire County Council and local councillor for Castle Ward, says he was delighted to participate in the opening of the “Sharing The Square” event. The four-day programme, running from April 24 to 27 at Haverfordwest Castle Square, invites the community to exchange memories and ideas for the future development of this historic area.

The initiative, in collaboration with local artists and Pembrokeshire County Council, aims to collect community input on potential improvements and address existing challenges in the square. The event also seeks to enhance the connectivity with the adjacent Haverfordwest Castle, focusing on pedestrian routes from the square to the castle.

A variety of public activities are scheduled to take place during the event. These include gardening, creative workshops, games, and musical performances, ensuring an engaging experience for all attendees. Among the highlights is an art workshop led by renowned artist Janetka Platun. Her session titled “What is Lost and What is Found?” offers participants of all ages and abilities the chance to develop model-making skills. Each attendee will create a small model housed in an acrylic box, using diverse and intriguing materials.

Local community groups have been invited to reserve a slot for this free workshop, which is available on the afternoons of 24th, 25th, and the morning and afternoon of 27th April. The project aims to provide a platform for residents to reflect on their personal connections to the square and envision its future.

Further details on the ongoing and future activities can be found on the project’s official website at www.sharingthesquare.org, and updates are regularly posted on their Instagram account @sharingthesquare.

The event has already attracted attention with various stakeholders, including Randell Izaiah Thomas-Turner, Danielle Thomas-Turner, and Guy Norman from Spacetocreate, contributing to the discussions and activities.

Photos from today’s activities can be viewed at The Edge Youth Centre’s social media, highlighting the community’s enthusiastic participation in shaping the future of Haverfordwest Castle Square.