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Shock brain tumour diagnosis inspire mum’s challenge to help find a cure

Thomas Sinclair

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A school-based youth worker from Llanelli in Carmarthenshire is raising money for Brain Tumour Research, in support of her 21-year-old son, who is living with a brain tumour. 

Mum-of-three Michelle Griffiths, 45, is taking on the 10,000 Steps a Day in February Challenge to raise vital funds for the charity. It’s after her son James Griffiths, a mechanical engineer, was diagnosed with a grade 3 oligodendroglioma in November 2020, after suffering seizures over several months. 

Michelle, James and Alex

Michelle, who also has a 24-year-old daughter and 13-year-old son, said: “James is really into his mountain biking and motocross. He was doing a competition one day in July 2019 when he fell and took a bump to the left side of his head. He had been wearing his helmet and felt OK, so decided not to go to hospital. Then, a few weeks later he was complaining of headaches and he was feeling more tired than usual. We wondered if it was the after-effects of his accident. I also noticed a slight change in his mood but it was nothing to write home about.

“Then, in December 2019, he was at work when all of a sudden he was unable to speak. He went to his GP, who said because James was young and healthy, there wasn’t much cause for concern but he was referred to the epilepsy clinic at Prince Philip Hospital for a head scan. We came away feeling reassured.”

James’ headaches and tiredness continued and months later he was still waiting for his referral when, in August 2020, he suffered a major seizure on a day out with friends in Mumbles in Swansea Bay.

Michelle, who works at St John Lloyd Catholic School in Llanelli, said: “I got a phone call to say James was at Morriston Hospital in Swansea. He’d collapsed and hurt his arm. His friends said he’d bitten his tongue and was frothing at the mouth. It was really scary.

“When James came round, he couldn’t remember anything. They took some details and referred him to the neurology department and he was sent home. I couldn’t help thinking that because of his age and the fact he’d been enjoying a day out with his mates, they were dismissing him as being drunk or drugged. That just wasn’t the case and he and I knew something was wrong.”  

A couple of days later James had another seizure and his dad, Gerard Griffiths, took him back to Morriston Hospital. James had an MRI scan and was told it was all-clear.

Michelle added: “Rather than relief, James came away feeling that nobody was listening. He was convinced there was something in his head but the fact they’d found nothing was a mystery. Meanwhile, he went back to work, which involved driving and using heavy machinery. With hindsight, it was so dangerous.”

James had another seizure in September 2020, when he was in the bathroom at his dad’s house. Gerard found him collapsed in the shower, paralysed on one side and covered in vomit, so he took him straight to Prince Philip Hospital. Frustratingly, James was checked over and sent home with paracetamol.

A few weeks later, James had a call from consultant neurologist Professor Powell at Morriston Hospital, to tell him that they had, in actual fact, found some swelling on his brain.

Michelle said: “After the phone call James couldn’t recall much of the conversation, so I rang and asked to speak to somebody. The following day, I got a call from a different doctor to tell me that James had been diagnosed with a large tumour on the left side of his brain. At that point, my world fell apart.”

James was put on steroids to reduce the swelling in his brain, while he waited for his case to be discussed by the multi-disciplinary team (MDT) in Cardiff.

Michelle said: “In the meantime, James’ sister Lucy took him back to Prince Philip Hospital, where the doctors explained more about the tumour, showing them the scan images and confirming its exact size and location. I was extremely grateful for that and then they quickly got the ball rolling for the MDT meeting.

“After that we had a video call with consultant neurosurgeon Kathrin Whitehouse, who talked us through the next steps. The way she dealt with James was amazing, putting him at ease. I felt confident putting all my trust in her.”

On 20 November 2020, James had a six-hour craniotomy at University Hospital of Wales in Cardiff. His surgeon was able to remove 80% of the tumour and a sample was sent away for a biopsy, which revealed it was a grade 3, meaning he would need further cancer treatment.

Michelle said: “James has nearly finished a 6.5-week course of radiotherapy at Singleton Hospital in Swansea, which has made him feel really tired and sick. He is having a week’s break before he starts a 12-month course of chemotherapy, to try to shrink the remainder of the tumour.

“It’s been particularly tough for him to deal with, as the COVID-19 restrictions mean he can’t see his friends in between treatment. He has also had to surrender his driving licence, which has been really hard for someone who usually loves driving.”

Inspired by James, Michelle and Lucy are joining thousands of other fundraisers around the country by putting her best foot forward in February, to part in a 10,000 Steps a Day in February Challenge, to raise money for Brain Tumour Research.

Steps can be completed however and with whoever participants like, ensuring they follow COVID-19 safety guidelines. Whether it’s heading to the local park to enjoy some fresh air, discovering a new running route every day or staying at home and completing the challenge around the house or garden, the possibilities are endless. Registrants can step out on their own, with members of their household or support bubble – whichever suits them best.

Michelle said: “I think in this kind of situation you either sink or swim and I have decided to try to do the latter and do something positive. You never think this will happen to you but it has and I’m having to deal with it and try to accept it. I’ve been able to do that thanks to the incredible support of Lucy, Gerard and all James’ family and friends.

James and Lucy

“Through James’ diagnosis I was shocked to discover that brain tumours kill more children and adults under the age of 40 than any other cancer, yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease. I’ve joined the 10,000 Steps a Day in February Facebook group and have been inspired reading other people’s stories. Before our own experience, I didn’t realise just how many people are affected by this awful disease. I hope by sharing my story, I can encourage other people to recognise the early signs of a brain tumour and to push back if they’re not happy with a doctor’s assessment.”

“James is amazing, taking it all in his stride and staying optimistic. He is my motivation and I want to make him proud.”

Joe Woollcott, community development manager at Brain Tumour Research, said: “We were so sorry to learn about James’ diagnosis and wish him all the very best with the next stage of his treatment. Our thoughts are with him, Michelle and the whole family.

“What Michelle and Lucy doing in support of their loved one is really inspirational and will be with them every step of the way, helping to get us closer to a cure. James’ story reminds us that brain tumours are indiscriminate; they can affect anyone at any age. We are determined to continue in our mission to find a cure for this terrible disease, to help prevent families like the Griffiths from dealing with this devastating diagnosis.

Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and the larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is calling for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia and is also campaigning for greater repurposing of drugs.

To donate to Brain Tumour Research via Michelle’s fundraising page, visit: https://www.facebook.com/donate/407939230416154/

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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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