Latest news with #Turner'ssyndrome
Daily Record
21-05-2025
- Health
- Daily Record
Big-hearted family use Bannockburn fundraiser to raise thousands for local cause
The charity night - which attracted an audience of 120 people - was designed to raise money for the Eilidh Brown Memorial Fund, set up after the tragic death of a teenager from cancer. A big-hearted family have raised almost £6000 for a local charity set up in memory of a teenager who died of a rare form of cancer. Caitlin Adams says her family have been avid fundraisers for all of her life and she too, over the last four years, has planned multiple fundraising events. But thanks to a meeting with the family of Eilidh Brown, she was inspired to dedicate the latest effort to the charity set up in Eilidh's name. Caitlin and her family hosted a charity night at McQ's Bannockburn in aid of the Eilidh Brown Memorial Fund, which was attended by more than 120 people and managed to raise an amazing £5,740 for the charity. 'My charity events first started off as bake sales for Cancer Research in 2022 and 2023, but last year I decided that I wanted to make it bigger and better and it was our first charity night in aid of CHAS. 'This year we chose the Eilidh Brown Memorial Fund as we wanted to raise as much awareness as possible. 'I hadn't actually heard of the charity until I met Eilidh's mum and dad last year (Gordon Brown and Nicole Lahbib Brown) thanks to their nephew (Christopher Hendry) who is my partner. 'Once I heard about the amazing work that they do and had a very emotional visit to Eilidh's Home, I knew that I had to choose them.' Eilidh Brown was 14 when she collapsed on a school trip in February 2009. A scan showed that she had a tumour the size of a melon which was quickly removed along with her left ovary. Further tests showed that the tumour was malignant and that Eilidh also had a form of Turner's syndrome, a chromosomal disorder that occurs in one of 2000 girls and likely made her predisposed to germ cell cancer in her ovaries. Eilidh sadly lost her 14 month battle with cancer on March 25, 2010, just nine days short of her 16th birthday. The effects of the cancer had a devastating impact on Eilidh and her family. They agreed that whatever the outcome would be, they wanted to somehow help others and ensure that Eilidh's legacy would continue and so the EIlidh Brown Memorial Fund was created. Eilidh's Home was built in the summer of 2022 at Thornhill and welcomed their first family in October of that year. The house acts as a sanctuary for young people and their families who are currently facing, have faced or have sadly lost a child to cancer. 'From stories that all of her family have shared with me, Eilidh was extremely brave, always had a smile on her face and inspired everyone who she came into contact with,' said Caitlin. She added: 'She was an extraordinary, loving, faithful girl who always thought of everyone else before herself.' Caitlin's sister Megan Adams flew up from London for the weekend to ensure that she could support with her 'amazing singing' and also help their dad William Adams, who MC for the event and bingo caller for 'Billy's Boogie Bingo'. 'My mum Cheryl Adams and my partner Christopher helped me with all of the 'behind the scenes',' said Caitlin, 'ensuring that the night went as smoothly as possible. 'We are all ecstatic with the amount that we managed to raise for this amazing charity and will continue to support and raise as much awareness as we can. 'We had numerous games on the night, Irish Bingo, Heads or Tails and our take on Boogie Bingo. 'There was also an amazing raffle table that some local business donated to, such as: Stirling Distillery; Nooch Bar & Kitches; Mateos Cafe; Allure Make up by Tracey Hunter; and The Flower Girls - Grangeburn.'
Yahoo
27-02-2025
- Health
- Yahoo
Failing heart saves two more lives in medical first
Three girls with major heart problems are thriving after one received a donor heart and then gave healthy valves from her original heart to two other girls. The 'domino' heart surgeries by a team at Duke Health marked the world's first living mitral valve replacement. Mitral valve replacement in children traditionally uses non-living tissue or mechanical valves, neither of which grow as a child grows. Instead, mitral valve replacement means a series of surgeries and blood thinners as the child outgrows the valve. Those surgeries can be risky and not all patients survive. 'There's not a good valve option for kids,' Dr. Douglas Overbey, assistant professor in the Department of Surgery at Duke University School of Medicine and one of the team members behind the pioneering procedure, said in a news release. 'They all require multiple surgeries, and we know they're going to fail down the road,' he said. 'That's something that's really hard to talk to parents about, knowing that you're going to have to do the same surgery with a new valve, maybe six months later because they're going to outgrow it.' All three of the girls were from North Carolina. Journi Kelly, 11, of Wilson, received the donor heart. She donated one of her original heart's valves to Margaret Van Bruggen, 14, of Charlotte. Then Kensley Frizzel, now 9, of Pembroke, received another valve from Journi's original heart. The mitral valve resides between the left chambers of the heart, serving as a one-way door to keep blood flowing in the right direction. It allows oxygenated blood from the lungs to flow into the ventricle, which is the heart's lower left chamber. The valve closes so that blood doesn't flow back into the left upper chamber, called the left atrium. When things go wrong with the valve, blood can leak backward, called mitral valve regurgitation. When the mitral valve stiffens or fuses together, it narrows and limits blood flow. Either condition can be very serious and the surgery can be risky. According to Duke, Journi had complained of a stomachache, but in the emergency department doctors discovered she was in heart failure. Two days later, she was flown by air ambulance to Duke and placed on the transplant waiting list. Her parents agreed that her old heart could be donated for use in a new procedure that could help other children. It was found that her valve structure was 'serendipitously' a good match for the other two girls. Margaret, a high school freshman, had contracted a bacterial infection that created holes in her mitral valve. The girl, a cross-country runner, was in the hospital when Journi's donor heart made the living valve transplant a possibility. Kensley has spent a lot of her young life in the hospital. She was diagnosed at birth with a genetic disorder called Turner's syndrome and had two operations before she was even two months old. A veteran of long hospital stays, her family was excited to be told that the mitral valve replacement might be the last surgery she would need. 'We were expecting she would need surgery, but we never knew this would be an option,' said Kenan Frizzell, Kensley's father. 'The whole situation is extraordinary, whether you look at it from the standpoint of a scientific breakthrough or the average person's point of view. I can't imagine all the coordination that's needed for something like this to take place, but as one of the families that benefited, we can't be anything other than grateful.' The mitral valve is inside and toward the back of the heart, so it's not easy to access. And the surgery for that reason can be challenging. The Duke team said it carries risks that are common with heart surgery. The mitral valve also has an odd, parachute-like shape that is not easy to sew into the heart. The news release called the living mitral valve replacement a type of 'partial heart transplant,' which Duke pioneered in 2022, providing functioning valves and arteries that in the case of children grow with the patient. 'Partial heart transplant was studied in Duke research labs before the procedure was done, and research shows the living valves do continue to grow. Duke has now performed 20 partial heart transplants under the guidance of the FDA,' per the release. That first 2022 surgery was hailed as ushering in a 'domino' heart transplant, where one heart saves more than one person. The Duke team said not all hearts donated are suitable for transplant, but many of those that are not suitable to operate as a full heart could be used for valves, boosting the number of people who receive life-saving procedures. 'To think that the lives of three girls could be saved after one full heart donation is amazing,' said Dr. Joseph Turek, Duke's chief of pediatric cardiac surgery. He performed the procedure with a large team after research in the lab said it was a viable option.
