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Daily Record
4 days 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
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'.
