Latest news with #DEBRA
Daily Record
19 hours ago
- Health
- Daily Record
Brave Ava backs skin disease campaign in memory of two baby sisters she never got to meet
Determined Ava Gardiner, from Tarbolton, Ayrshire, is taking on a full year of gruelling challenges for TEAM EB in the battle against the painful condition, also known as Butterfly Skin. Celebs and everyday Scots are signing up to join TEAM EB with the Daily Record by taking on a challenge for DEBRA this summer. But determined Ava Gardiner is going even further with a full year of gruelling missions for the charity, dedicated to the two sisters she never got to meet. The 21-year-old's family, from Tarbolton, Ayrshire, have been deeply impacted by EB, or Butterfly Skin, as her older sisters Georgia and Freya tragically lost their battles against the condition. Ava is determined to help other families find hope of a cure. She said: 'I will forever be connected to DEBRA and will continue the good fight in memory of my sisters for as long as it takes to eradicate this horrendous condition. 'I chose to dedicate my 21st year to pursuing several personal challenges and raising awareness of EB. They have not been without pain but that's my challenge. 'I can now tick off Edinburgh Marathon, May 2024, Aintree half Marathon, February 2025, Kelpies Supernova, March 2025 and Barcelona Hyrox, April 2025. 'This week, I will attempt Tough Mudder Scotland for TEAM EB. 'If one person in every town and village is inspired to take on their own challenge, however small, then together, the Daily Record and TEAM EB will achieve something wonderful. 'I know how proud my Mum is of all three of her daughters and she is my biggest supporter. 'My family will be forever grateful to DEBRA for its care and support and that is why I will continue to fight so that families in the future never go through the pain of losing a child to EB.' Ava's parents, Kirsteen and Sam, had never even heard of EB until their first daughter Georgia was born with the rare form, Severe Junctional EB, 25 years ago. She said: 'This is fatal in infancy due to such severe blistering across the whole body and internal organs, making it difficult for infants to feed and digest food. 'Born after a normal pregnancy, Georgia arrived into the world with significant damage to her skin and immediately struggled to breathe. She was very quickly taken to special care and my parents were told that Georgia would be unlikely to survive to night and were supported to say their final goodbyes. 'Georgia miraculously survived her first night in this world although my parents knew her life could end at any moment. Doctors liaised with experts at Great Ormond Street Hospital (GOSH) in London and the family learned the full extent and horror of EB. 'At that time DEBRA did not have a dedicated team in Scotland and advice for practitioners came from specialists in London. Georgia died aged four weeks old. Ava said: 'In that short time she made a massive impact.' Join the Daily Record WhatsApp community! Get the latest news sent straight to your messages by joining our WhatsApp community today. You'll receive daily updates on breaking news as well as the top headlines across Scotland. No one will be able to see who is signed up and no one can send messages except the Daily Record team. All you have to do is click here if you're on mobile, select 'Join Community' and you're in! If you're on a desktop, simply scan the QR code above with your phone and click 'Join Community'. We also treat our community members to special offers, promotions, and adverts from us and our partners. If you don't like our community, you can check out any time you like. To leave our community click on the name at the top of your screen and choose 'exit group'. If you're curious, you can read our Privacy Notice. DEBRA reached out to Ava's parents and began a relationship that sadly would be very much needed again and less than two years later they were pregnant with their second child. The charity had expanded its services in Scotland and in 2002 co-ordinated pre-natal testing and pregnancy support for the couple. A foetal skin biopsy sadly confirmed that, like her sister, Freya also had EB. Ava said: 'My Mum's experience carrying and delivering a baby with EB was hugely different second time around. Although the outcome was inevitable, Mum's understanding of EB together with the healthcare team's approach ensured Freya's arrival was unique. 'DEBRA provided guidance and advice for everyone involved in Freya's care and early in 2003, she was born into this world inside her amniotic sac, a rare occurrence but one which kept Freya's skin perfectly protected and unblistered for her precious first moments in the world. 'Like her elder sister, Freya was a fighter. Her battle with EB lasted for three months.' When the couple got pregnant for a third time they again travelled to London for testing. Thankfully, doctors were able to confirm that their third daughter, Ava, did not have EB. Ava grew up with her family campaigning to raise funds for DEBRA to help stop other families facing the ordeals they had – but insists more needs to be done to educate. She said: 'I have many early memories of my parents fundraising for DEBRA at our village gala days. They did anything from selling homemade tablet to braving zip slides. Mum's friends donated proceeds from their own events over the years, all to raise vital funds for research and ultimately a cure for EB. 'My local community is aware of EB because of my family's experience and that will be the same in other towns up and down the country but the reach needs to be greater in order to make the difference the EB community deserves. 'The Daily Record's support of Team EB this year will help to do this, sharing our message across the whole country – thank you to them and to everyone who wants to help.' Former Gers boss Graeme Souness swam the Channel this month for DEBRA while charity ambassador Scott Brown, who starred for Celtic, is also urging Scots to join in. Join Team EB by signing up for any challenge you choose, from marathons or swims to short walks or extra steps each day.
Daily Record
26-05-2025
- Health
- Daily Record
Scots 'butterfly girl' opens up on daily struggle with painful rare skin condition
EXCLUSIVE: Isla Grist lives with epidermolysis bullosa, which she describes as a "constant battle". Teenager Isla Grist has opened up on the constant struggle she faces living with a rare genetic skin blistering condition. Isla, 16, also thanked her football legend pal Graeme Souness for his help in raising awareness of the painful disease known as butterfly skin. The former Rangers boss recently swam the Channel for epidermolysis bullosa charity DEBRA. Souness and fellow Old Firm hero Scott Brown – also an ambassador for the charity – have now asked people to sign up to Join Team EB and do their own challenge. Isla, from the Black Isle, near Inverness, said: 'Living with EB is a constant battle. It is painful. Inconvenient. It's a horrible thing to live with. I'm itchy and in pain all the time. 'I can't do things normal people do, like walk unaided and hold a cup of tea. I spend a huge amount of time getting my bandages changed and going to hospital appointments. 'I just want to lead a normal free from the incessant itch and pain. It is intolerable.' But the inspirational teenager said that it helps to know that the public want to support her and hopes the challenge campaign spreads awareness so more people understand her condition. She said: 'I think that it's great that people in Scotland want to get involved and spread awareness of EB. 'Graeme and I are both proud to be Scottish and would love the nation to do whatever they can. 'If you are thinking about a challenge, just do it, every little helps. Thank you for being part of the battle against EB. 'It's important for people to talk about it. The more people that know about EB and understand how painful it is, the easier it is for those of us living with EB. 'So many people have been so kind, supportive and generous which makes me very grateful.' Isla helped Graeme through his recent double swim of the English Channel, when he was struggling at the mid-point and a call from her spurred him on to finish the gruelling task. She said: 'It made me feel blessed that I could do that for him, and help get him to the finish line. 'I feel very privileged that he has done these challenges on behalf of me and all of the EB community.' Graeme, 72, said: 'I was seriously flagging in the middle but a call from Isla really gave me the boost (and perspective!) I needed to forge on. 'She was having her gruelling five-hour bandage change but typically for her, she still wanted to call me to spur me on. 'This is why we are doing this – and it's why we are now asking anyone who wants to push themselves for a brilliant, really important cause to Join Team EB.' Former Celtic captain Scott added: 'I don't think that I'll be swimming the Channel but I'm definitely looking at ideas to do a challenge of my own for DEBRA this summer. 'I hope the people of Scotland will get behind us and join Team EB – kids like Isla deserve a shot at a better life with our help.' Join the Daily Record WhatsApp community! Get the latest news sent straight to your messages by joining our WhatsApp community today. You'll receive daily updates on breaking news as well as the top headlines across Scotland. No one will be able to see who is signed up and no one can send messages except the Daily Record team. All you have to do is click here if you're on mobile, select 'Join Community' and you're in! If you're on a desktop, simply scan the QR code above with your phone and click 'Join Community'. We also treat our community members to special offers, promotions, and adverts from us and our partners. If you don't like our community, you can check out any time you like. To leave our community click on the name at the top of your screen and choose 'exit group'. If you're curious, you can read our Privacy Notice. Isla was also impressed by the team from The Malletsheugh restaurant in Glasgow who jumped out of a plane in DEBRA T-shirts to help launch the campaign last weekend. She said: 'Well done. That must have taken some courage. I couldn't do it! Thank you for supporting DEBRA. And thank you to the Daily Record for helping us.' Isla admitted she is puzzled when people talk about the hardman Graeme was known as in his footballing and management careers. She says she has only known him as her friend who hates to see her in pain. And the brave teenager has a challenge for the legendary midfield enforcer too. 'Graeme, I challenge you to say no to my Paddington Bear stare! 'I have only known him as the Graeme he is today. So to think of the footballer Graeme is weird to me. 'Thank you again to everyone – together we can fight this. 'Scottish people are the best in the world and I truly value your support and solidarity '. If you would like to take on any sort of challenge for DEBRA with the Daily Record – walk, run, take on a swim, add daily steps, walk your dog, or anything at all – then you should visit join-team-eb.
Daily Record
12-05-2025
- Business
- Daily Record
What is left of Scotland's steel sector can play an important role for years to come
Scotland's steel industry is a shadow of its former self. Gone are the days when plants like Gartcosh and Ravenscraig employed thousands of workers. But that's not to say that's what left of the sector cannot play an important role for years to come. The Dalzell works in Motherwell is one of only two mills left in Scotland and specialises in the production of heavy steel plate used in military shipbuilding. But no finished product is leaving the site at present as its 140-strong workforce is either furloughed or on care and maintenance duties. Dalzell, like the Clydebridge steel works near Cambuslang, has been mothballed by its private foreign owners. Keir Starmer is right to ask questions on what happens next for steel in Scotland. The UK Government has taken steps to nationalise the giant steel works in Scunthorpe and negotiated a reduction in tariffs with the US on exports. The takeover of Dalzell and Clydebridge in 2016 by metals tycoon Sanjeev Gupta was facilitated by a Scottish Government-backed loan. With public money involved, the public has a right to know what's happening with the steel works in Lanarkshire. Labour and the SNP can't make this another blame game, similar to how the last months of Grangemouth's oil refinery played out. There is no reason why the Lanarkshire steel works can't play a part in a wider UK industry linked to Scunthorpe. But this will require grown-up cooperation between Holyrood and Westminster, not petty political point scoring. Legends united Football legends Graeme Souness and Scott Brown may have been on different sides of the Old Firm divide. But they're joining forces to back a campaign by skin charity DEBRA to help people suffering from 'butterfly disease' EB. This agonising condition sees skin blister and fall off at the slightest touch. Scots teenager Isla Grist is among the EB sufferers desperate for an effective treatment. To raise funds for research DEBRA are urging Scots to take part in a fundraising summer challenge. Graeme and Scott are among thousands of Scots taking up the challenge – which is being backed by the Daily Record. You can do any challenge – a run, walk, cycle, swim, dance, or anything else you fancy. So as the sun comes out at the start of a fine summer please take a look at Debra's website to see how you can join in. It's all for a great cause – and might do you some good too.
Daily Record
12-05-2025
- Health
- Daily Record
Celtic icon Scott Brown and Rangers legend Graeme Souness back campaign fighting painful skin disease
Graemen Souness was inspired to do his own challenge by his young friend Isla Grist, who suffers from the agonising EB condition - known as the 'butterfly disease'. Old Firm legends Graeme Souness and Scott Brown have bridged the Glasgow football divide to support Scots fighting a painful skin disease. Former Gers boss Souness swam the Channel last week for EB charity DEBRA – and now he's asking everyday people to sign up to JOIN TEAM EB and do their own challenge. Charity ambassador Scott Brown, who starred for Celtic, is also taking part in the challenge and is asking other Scots to join in. DEBRA are urging Scots to do any challenge - a run, walk, cycle, swim, dance, or something else physical for their summer campaign, backed by the Daily Record. Graeme was inspired to do his own challenge by his young friend Isla Grist, who suffers from the agonising EB condition - known as the 'butterfly disease'. Graeme said: 'I want to thank everyone who has supported our challenges – and also invite you all to join in, helping to raise vital funds and awareness to help people like Isla through the pain of EB. 'The challenge we faced was tough, but everyday life is much tougher with EB. So I hope lots of people reading this will get on board and JOIN TEAM EB – you can sign up to do any sort of challenge you want. 'It's hard pushing through a physical or mental challenge, but you feel a great sense of achievement and it makes you really think about how lucky you actually are in day to day life. 'I hope lots of you will join us to show support for people like my friend Isla living with EB – and hopefully you will enjoy the experience too.' Graeme again took on a gruelling swim for DEBRA – but this time doubled the distance. 'We completed the 59 (nautical) miles of the English Channel, to France and back, landing back to English shores on the Thursday. 'I was in a pretty bad way that night, still trying to recover from the seasickness, heat exhaustion and dehydration but woke on Friday feeling a bit more like myself. 'I'm carrying a few aches and pains but it's nothing compared to what Isla and others like her go through every minute of every day.' Graeme admits he was struggling at the mid point of the marathon swim – but speaking with Isla got him through it. 'I was seriously flagging in the middle but a call from Isla really gave me the boost (and perspective!) I needed to forge on. She was having her gruelling five-hour bandage change but typically for her, she still wanted to call me to spur me on. 'This is why we are doing this – and it's why we are now asking anyone who wants to push themselves for a brilliant, really important cause to JOIN TEAM EB. 'It's open to everyone, we want to have a real spirit of unity behind DEBRA to one day find a cure for EB – everybody is welcome.' DEBRA ambassador Scott Brown is proud to support the charity and is fully behind the summer challenges campaign as we work to raise funds and awareness to help those living with EB. Scott is working on ideas for his own challenge in support of DEBRA – and hopes to encourage Scots to JOIN TEAM EB. Scott said: 'I don't think I'll be swimming the Channel but I'm definitely looking at ideas to do a challenge of my own for DEBRA this summer. 'It's amazing to see how people can push themselves, the power of inspiration and of wanting to help. 'What Graeme has done is incredible – but the idea now is that everyone can be a hero, everyone can sign up and support the team to help people who really need it. 'That's really exciting and honestly any sort of challenge people feel they want to do for us is amazing – you don't have to do something crazy, it can be as big or as small as you feel is right. 'It's about welcoming everyone together to one big team to help people who really face ordeals and challenges every second of every day of their lives. 'That's why I am part of Team EB and why I hope more and more people will get involved, so we can create something really special.' Scott has a few ideas already for his own TEAM EB challenge – and it seems the first fundraisers to sign up have caught his eye with their crazy idea. 'Whatever it is, I will take on something that pushes me and makes me fight through struggle – it's something I have always done and always will. 'I hope the people of Scotland will get behind us and JOIN TEAM EB – kids like Isla deserve a shot at a better life with our help.' Join the Daily Record WhatsApp community! Get the latest news sent straight to your messages by joining our WhatsApp community today. You'll receive daily updates on breaking news as well as the top headlines across Scotland. No one will be able to see who is signed up and no one can send messages except the Daily Record team. All you have to do is click here if you're on mobile, select 'Join Community' and you're in! If you're on a desktop, simply scan the QR code above with your phone and click 'Join Community'. We also treat our community members to special offers, promotions, and adverts from us and our partners. If you don't like our community, you can check out any time you like. To leave our community click on the name at the top of your screen and choose 'exit group'.
Daily Record
10-05-2025
- Entertainment
- Daily Record
Butterfly Skin charity DEBRA launches summer campaign asking Scots to sign up for a challenge
A summer campaign is being launched by Butterfly Skin charity DEBRA with the Daily Record. Butterfly Skin charity DEBRA is launching a summer campaign with the Daily Record asking you to sign up for a challenge and Join Team EB – and it's open to everyone. Celebs, businesses, schools and everyday people are all joining in and challenges can be anything you want, from running to doing some extra daily steps, or something crazy. A team from an Indian restaurant in Glasgow are making sure it gets off to a flyer by launching themselves out of a plane tomorrow. DEBRA vice-president Graeme Souness swam the Channel last week as part of a team and other celebs are jumping on board too, such as DEBRA ambassadors Scott Brown and TV sport presenter Emma Dodds. But Emma says it's not about the stars – this is about everyday people helping improve lives while taking on healthy fun challenges. Emma said: 'I think giving people the chance to join Team EB is a really good idea, to increase awareness and find out more about the charity – but it also lets people get involved. 'I love that the challenge doesn't need to be really hardcore – it can be dog walking, doing some extra steps on your watch every day, whatever it is you feel you'd like to challenge yourself to do. 'It gets the message of DEBRA and what we are working to achieve out and helps bring in more people to really be part of it all. 'A few of us have been talking behind the scenes about challenge ideas and there are great ones, from doing an extra few thousand steps to three rounds of golf in a day. Others are doing skydives, running marathons and, of course, Graeme swam the Channel there and back. 'But this whole campaign is about showing it doesn't have to be a huge impossible task – whatever challenge you feel comfortable trying for DEBRA, that's what you do. 'It's more about being part of something and really getting behind the amazing work DEBRA does.' Emma is blown away by the team from Glasgow restaurant The Malletsheugh deciding to jump out of a plane to give the campaign the perfect launch platform. She said: 'I love the skydive idea. It's amazing the guys are doing this for DEBRA, it's so admirable. 'Jumping out of a plane is something not a lot of people would want to do, fair play to them to help us kick this off big-style. 'They have set a high bar for us to all follow, they have set the tone in some style. 'I think it will inspire a lot of people.' The team from The Malletsheugh are thrilled to be the first to sign up to Join Team EB – and their challenge is a special way to get the summer campaign off the ground. Aman Birk 30, Bobby Birk, 29, Humza Qadri, 24, Gurbachan Singh, 42, Rhys Hamilton, 18, Arpan Lama, 25, and Sabi Singh, 30, wanted to do something special to show their appreciation for the incredible support they have had since opening 18 months ago, winning multiple awards and running community events like a silent fireworks display while supporting local charities. When team leader Bobby heard about the summer of challenges go Join Team EB for DEBRA, he jumped at the chance to sign up – even though he's terrified of heights. Bobby said: 'This is pretty out there for me as I've always had a real thing about heights but when we heard about this challenge through friends who help out at DEBRA, it was something we wanted to support and try to help bring attention to the agony EB patients have to live with. 'It puts our own things into perspective – we all have difficulties in life but it really does bring it home how lucky most of us are when you see the constant pain and struggle of EB. 'I knew nothing about DEBRA or EB until I saw Graeme on TV talking about it and it hit home – I spoke to my family and to our team at the restaurant and we felt we should do something to help spread the word. 'A few people said they would love to do a skydive but were scared to take the plunge and it just felt right, so we signed up and we're jumping out of a plane Sunday, May 11. 'I really am scared of heights, so I don't know how I will feel hanging out of the open door, up in the air. If I have to be thrown out, I'll do it – it's nothing compared to the things EB patients face every minute of every day. 'We have put up a fundraising page and everything goes to this appeal, so please help if you can – and why not take on a challenge of your own? 'It's all about spreading the word and helping this brilliant charity.' If you want to Join Team EB, go to Join the Daily Record WhatsApp community! Get the latest news sent straight to your messages by joining our WhatsApp community today. You'll receive daily updates on breaking news as well as the top headlines across Scotland. No one will be able to see who is signed up and no one can send messages except the Daily Record team. All you have to do is click here if you're on mobile, select 'Join Community' and you're in! If you're on a desktop, simply scan the QR code above with your phone and click 'Join Community'. We also treat our community members to special offers, promotions, and adverts from us and our partners. If you don't like our community, you can check out any time you like. To leave our community click on the name at the top of your screen and choose 'exit group'.
