Charity event to raise funds for palliative care unit in Kerry
Family and friends of a young girl who died from a rare form of cancer are to hold a charity bike ride to help raise funds for a palliative care unit in Kerry and Tipperary.
Lily Anna Sebestova, aged 10, from Tralee passed away on November 15, 2024, after a three-year battle with cancer.
Lily had donated her hand for cancer research to help others during her illness.
Her heartbroken mother Lorraine told the Irish Examiner how the family was forced to live apart during her daughter's treatment in Dublin due to a lack of facilities closer to home.
'We practically lived in Dublin', she said. 'Lily suffered and that broke us all up."
We were living like a separated family. I was in Dublin and my husband was in Kerry with our son.
Ms Sebestova vowed that she would try and 'help others' just as her daughter wanted by highlighting the long distance they were forced to travel due to a lack of palliative care services in Munster.
Now, a group of bike riders have launched a fundraiser, 'Eastbound and Down' in aid of the Kerry Hospice Foundation and Cashel Ward Palliative Care suite.
The non-stop 1,500km ride will take place over a 24-hour period from July 4, beginning in Dunmore Head and finishing at Kerry General Hospital.
Writing on their Idonate and Facebook page, the group said: 'Last year we raised just under €10,000 for the Kerry Hospice Foundation but this year we are raising much needed funds for a new much needed cause as well as the Kerry hospice foundation.
'The Cashel ward palliative care suite , a place where children can go if needed.
Unfortunately, cancer touches every house at one time or another and we need to help out to raise funds to make their last days more comfortable for those suffering.
'So, our run leaves at 11am from Dunmore head in Dingle, we go to Malin Head, Burr Point, Mizen Head, and back to the Kerry General Hospital in 24 hours non-stop riding, 6 of us on motorbikes which will be tracked by Fleet Data so you can follow us as we are moving.
'This run is in honour of a little girl we lost last year to the dreaded cancer, Lily Anna Sebestova, please donate and share this page far and wide'.
Lily Anna Sebestova, aged 10, from Tralee passed away on November 15, 2024, after a three-year battle with cancer.
Lily battled hard against alveolar rhabdomyosarcoma - a rare and aggressive form of cancer.
The tumour is extremely fast growing and usually occurs in teenagers and young adults and spreads widely at an early stage.
Her mother said 'everything went against us' even the form of cancer her daughter suffered.
'It was so rare I didn't even have another parent to talk to about it' she said.
She described her daughter as a 'firecracker' and the 'biggest advocate for herself in her journey in cancer'.
'Her diagnosis did not stop her,' she said.
'She had her hand amputated and by the time we were home she was down looking for pancakes and she was whisking the batter next to me five days later.
'She was an inspiration. From day one, she took on board what was given to her, and even though we cried, and we carried this pain, she did it. She donated her hand; she signed that paper in the hopes of changing lives. She did that.'
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Irish Examiner
a day ago
- Irish Examiner
CHI failure to deliver international best practice 'harmed' children, among findings of report
The unpublished report, seen by the Irish Examiner, into concerns at Children's Health Ireland hospital identified: • An unknown number of children — between five and 80 — with the same health condition receive 'suboptimal' care at this hospital compared to how patients with the same condition are treated in another CHI hospital. They were known as 'orphans' internally, with one staff member interviewed saying: 'How can you have patients that aren't someone's responsibility?' • Some of the children may develop cancer or be infertile due to delays related to a procedure which should be done by 18 months old. • The review quotes another unpublished report from 2017, which warned of similar problems for these patients. It says by 2021 they found 'lack of clarity' about actions taken on that older report. • National Treatment Purchase Fund monies given for 'insourcing' to run extra clinics for 179 children is questioned. Some 95% of children seen could have been seen in another service during regular hours without extra funding. Some could have been seen sooner. Some of the children were referred to an inpatient waiting list which was longer than at another service which could have treated them. The review found this was 'potentially negligent'. • Risk assessment in 2021 for one national service said children being treated 'have a poor experience or are harmed due to the inability of CHI to deliver international best practice standards of [this care]'. It was given a risk score of 20 out of 25 • A 'toxic culture' was identified, with three specialist nurses leaving one service between 2013 and 2021. Comments show one person had panic attacks at work. Trainee doctors faced a 'psychologically unsafe environment' in one department reviewed. • Some 89% of people interviewed described 'a culture where change was slow, which lacked governance and robust processes' across CHI as a whole, while 43% said 'they wanted to see real change across CHI'. • A defamation case is on-going between two consultants, which the report linked to 'fraught relationships' between two services in which they work.
Sunday World
2 days ago
- Sunday World
‘Runners don't think about sun cream': Parkrun director on painful skin condition
'I'm not looking for sympathy. But I thought: 'If I show my face and tell people what it is, then maybe they'll learn from it,'' Eric is known at the Waterworks Parkrun for singing and wearing a backwards baseball cap, which will now be front-facing A Co Antrim runner is attempting to raise awareness for a painful skin condition caused by sun damage, after he was diagnosed with actinic keratosis earlier this year. Eric Montgomery (68) is a familiar face at Waterworks Parkrun in Belfast, where he has been a volunteer and participant since the event's beginnings 15 years ago. However, on Saturday, he marked a milestone with a difference — returning as run director for the 700th Waterworks event, just days after finishing a gruelling three-week course of treatment that left his face raw, red and inflamed. 'I just wanted to give people a heads-up so they're not traumatised when they see my bake,' he wrote in a now-viral Facebook post to the Parkrun community, attaching a photo of his blistered skin. 'Please, always slap sun cream on your gob.' Eric running for Lagan Valley AC in 2023 Actinic keratosis, also known as solar keratosis, is a rough, scaly patch on the skin that develops from years of exposure to ultraviolet (UV) radiation, commonly from the sun. Though it starts as sun damage, if left untreated it can sometimes lead to skin cancer. The condition is more common in older adults and those who've spent long periods outdoors without protection. Eric, who has spent much of his working life outside — first in the shipyard, and later as a leakage engineer for the water service — said the first signs appeared more than a year ago. 'It started with dry skin on both sides of my eyes. My wife kept telling me to use moisturiser. I tried E45 and all sorts, but it didn't shift,' he said. 'Then about six months ago, two little dots appeared on my cheek, and they crusted over.' 'From now on, my baseball cap will be frontwards — and there'll be factor 50 underneath it' When Eric finally went to his GP, he was referred to dermatology, where the diagnosis was confirmed. 'The consultant explained it to me in simple terms. She said: 'Think of it like angina — a warning of something worse. It can be treated — but if you don't [treat it], it can lead to cancer.' And as soon as you hear that, you panic.' The treatment comprised a powerful cream applied to the entire face daily for three weeks. While the cream targets visible damage, it also draws out hidden damage beneath the skin, leading to an intense reaction that's difficult to hide and hard to bear. 'You wouldn't have seen anything the first week. Second week, it started to appear. But see that third week? Brutal,' Eric said. 'I was up in the middle of the night for hours with the pain. It's like the worst sunburn you've ever had, and then some.' Still, he was determined not to shy away from his Parkrun volunteer duties. We need your consent to load this Social Media content. We use a number of different Social Media outlets to manage extra content that can set cookies on your device and collect data about your activity. Please review your details and accept them to load the content 'I'm not looking for sympathy. But I thought: 'If I show my face and tell people what it is, then maybe they'll learn from it,'' he explained. 'Especially in the running community, we're out all year round. And a lot of people don't think about sun cream here. I never did. Not in Belfast.' Eric admits he used to be the kind of person who put on 'a bit of factor 15 on holiday' and didn't think much more of it. But during a recent trip to Tenerife, after his diagnosis, he covered up for the first time. Runner Eric Montgomery developed a painful skin condition after years of sun exposure ui 'I bought a big floppy hat and used factor 50 every day. I'd never done that before in my life. But once you know what the damage is, you realise you don't want to make it worse.' Waterworks Parkrun was the first ever Parkrun in Ireland when it launched in November 2010, and Eric has been there from the beginning. A member of Lagan Valley Running Athletics Club for more than 30 years, Eric has long been known to regulars as the 'singing run director' thanks to his habit of breaking into homemade songs during the morning briefing: 'People love it. I've made up loads of songs about Parkrun over the years — it just makes it a bit of fun.' We need your consent to load this Social Media content. We use a number of different Social Media outlets to manage extra content that can set cookies on your device and collect data about your activity. Please review your details and accept them to load the content His wife, also a keen runner, celebrated her 500th Parkrun at Waterworks last year. Though Eric is the more competitive of the two, he says Parkrun has been the perfect environment for them both. 'She used to be embarrassed about being slow, but that's the whole point of Parkrun — it's for everyone. It's not about the time; it's about the taking part.' On a typical Saturday, Waterworks Parkrun attracts around 250-300 runners. But with the latest being the 700th event — plus Eric's post attracting nearly 1,000 likes and comments — he's expecting a few more attendees this coming weekend, including visitors trying to tick off the letter W as part of the Parkrun alphabet challenge. Eric developed a painful skin condition after years of sun exposure It's that same community spirit that encouraged him to speak out. 'Since I posted about it, it's been amazing how many people messaged me saying they've had the same thing, or didn't know what it was called,' he said. 'It's sore. It's really sore. But if it gets people thinking about sun protection, then it's worth it.' From now on, one thing will definitely be changing, he said: 'I always wear my baseball cap backwards. But from now on, it'll be frontwards — and there'll be factor 50 underneath it.'
Extra.ie
2 days ago
- Extra.ie
Parents issue warning as 19-year-old dies following viral trend
A 'vivacious' 19-year-old has died after taking part in a viral social media trend called 'dusting.' Renna O'Rourke often told her parents Dana and Aaron that she was going to be famous, with the pair devastated that Renna has found fame under horror circumstances. The young woman was pronounced brain dead at 1.30pm on Sunday, June 1 after four days in ICU (Intensive Care Unit) with her parents raising awareness to the dangers of 'dusting.' A 'vivacious' 19-year-old has died after taking part in a viral social media trend called 'dusting.' Pic: Go Fund Me The viral trend sees youngsters sniffing computer dusting spray in a bid to get high, with Dana explaining to AZ Family: 'There's no ID required. It's odourless. It's everything kids look for. 'They can afford it, they can get it, and it doesn't show in mom and dad's drug test.' The dangerous trend is also known as chroming and/or huffing. ICU lead at HonorHealth Scottsdale Osborn Medical Centre told the publication that when inhaled, the gas replaces oxygen within a person's lungs and the rest of their body. Renna O'Rourke often told her parents Dana and Aaron that she was going to be famous, with the pair devastated that Renna has found fame under horror circumstances. Pic: Facebook This leads to a drunk feeling for a number of minutes with one go at the viral trend causing potentially fatal damage. Dr Weisman detailed: 'Failure of the liver, heart failure, disease of the lungs.' American teen Renna's death was caused by sudden sniffing death syndrome, with a number of teenagers dying as a result. Dana appealed to parents of teenagers to search their rooms to ensure they weren't in possession of the product. 'Don't trust and that sounds horrible, but it could save their life,' she said. A Go Fund Me has since been launched for the Love and Legacy of the late Renna, with her father Aaron detailing that the funds will be used for medical bills, burial and therapy costs and to aid with spreading awareness. 'We are currently actively working on both a TV news segment and pursuing legislation to help prevent any other families from having to go through this,' he added.
