Staff and customers of a Leyland hair salon have raised £290 to support children and young people with liver disease. The team at Hair Central joined in Big Yellow Friday, the national fundraising and awareness day for childhood liver disease, organised by Children’s Liver Disease Foundation (now merged with the British Liver Trust). 

Inspired by salon manager, Sophie Woodhouse, who was born with the rare liver disease, biliary atresia, the team organised a cake sale which ran throughout March 13 and 14 and proved extremely popular! 

“As a child I always understood that I had a poorly liver, says Sophie, 25. “And I feel fortunate that apart from regular hospital appointments and blood tests, I had a pretty normal childhood. The only time I ever felt different was the “chore” of taking my meds every morning and night, especially at a sleep over.  

“But while I may have been too young to worry about it, it was certainly not the case for my family! I know my dad, Andrew, got a lot of information and support from Children’s Liver Disease Foundation when I was young. So this charity will always be important to me. 

“For the past 20 years my health has fortunately been stable. I still have three-monthly blood tests at our local hospital and an annual appointment with my liver consultant in Birmingham. I am conscious that having a weak immune system and working with the public, means I have to be extra careful, but I feel so lucky to be doing a job that I love. It’s a great feeling to be doing something so creative, making people feel amazing when they leave the salon and I’m now looking into teaching hairdressing.  

“Now felt like a good time to give something back and also to raise awareness of a smaller charity that many people don’t know about. I was so pleased to see that my colleagues were enthusiastic to join in Big YelIow Friday too. We had a great selection of home baking, our customers were very generous, and I feel really proud to have raised so much for a charity so close to my heart.” 

Michelle Wilkins, Head of Children and Families Services at British Liver Trust, commented: “We’ve supported Sophie and her family for many years now and it’s wonderful to see that she is pursuing a career which she loves – what an inspiration to other young people with liver disease. It’s brilliant that her colleagues and customers were so supportive of her fundraising and she should be proud to know that her efforts are helping children and families around the UK affected by childhood liver disease.”  

  

You can support Big Yellow Friday by going to Big Yellow Friday | Children’s Liver Disease Foundation  

 

Pupils at St Johns CofE Primary School in Digswell swapped their school uniform for yellow last week, raising £529 to support young people and families affected by childhood liver disease. The school was taking part in Big Yellow Friday, the national fundraising and awareness day of Children’s Liver Disease Foundation (now merged with the British Liver Trust) and children were inspired to support the charity as two of their classmates have been directly affected. 

Eight-year-old Isaac, who was born with the rare condition, Alagille syndrome, received two liver transplants in the space of a few days in 2020.    Since then, he has thrived and is able to live life to the full. His mum Liz says: “Isaac is very aware that two boys saved his life and how lucky we are he got the chance to thrive. Quite simply, without organ donation, Isaac wouldn’t be here today.  

“Children’s Liver Disease Foundation played a huge part in helping us come to terms with living with a child with liver disease. We had never even heard of Alagille syndrome until Isaac was diagnosed. We’re supporting Big Yellow Friday both because we want to show people Isaac doesn’t have to live a life defined by liver disease and because we want to keep this incredible charity going to support other families like ours.” 

Isaac’s friend Theo (10) knows all about childhood liver disease because his big brother, Nico (now19), was diagnosed at five years old with congenital hepatic fibrosis and was told three and a half years ago that he needed a liver transplant. 

“The impact this has had on our family has been huge,” explains Theo and Nico’s mum, Aimee. “Waiting over three years felt like life was on hold, with constant worry as Nico’s chronic condition worsened, began affecting other organs, and reduced his overall capability. The ongoing appointments, hospital admissions, and time spent separated as a family really took their toll. 

“The long-awaited call finally came through last month and we’re so grateful that Nico has now received his gift of life. It’s early days but the signs are positive that his liver transplant has been a success. 

“Throughout all of this, Theo’s school has shown real compassion and flexibility which has helped him to cope with everything which has been going on at home. So, it seems really fitting that this is where our Big Yellow Friday fundraiser should take place. The support we have received from Children’s Liver Disease Foundation has been invaluable, especially during the long waiting period when uncertainty felt relentless. Knowing there is a charity dedicated specifically to children and young people with liver disease and to their families brings reassurance that you are not navigating this alone. So, supporting Big Yellow Friday felt like a way of giving back and standing alongside other families walking a similar path.” 

Michelle Wilkins, Head of Children and Families Services at British Liver Trust, added: “Having supported both families over the years, it’s wonderful to see them joining in with Big Yellow Friday. And we’re delighted to see that the event is taking place at school. A supportive school environment makes a huge difference to a child with a liver condition and Big Yellow Friday is a great opportunity to raise awareness and understanding of childhood liver disease. The funds raised will help us make a real difference to young people and their families around the UK and we’re truly grateful”  

  

You can support Big Yellow Friday by going to Big Yellow Friday | Children’s Liver Disease Foundation  

  

 

An 11-year-old girl from Brechin is planning a fundraiser this week as part of Big Yellow Friday, the annual awareness and fundraising day for Children’s Liver Disease Foundation (now merged with British Liver Trust). The charity is a special one to Fearne as it provided her family with information and support when she became very ill at the age of six. 

“Fearne had been a perfectly healthy little girl when one Saturday morning, she started vomiting blood – it was just terrifying” says her mum, Susan Tough. “We were rushed to our local hospital but after a few days we had to be transferred to the specialist children’s liver unit at King’s College Hospital, London. 

“It was at Kings that Fearne was diagnosed with portal hypertension caused by a portal vein thrombosis. And it was also here that we first found out about Children’s Liver Disease Foundation because doctors handed us their leaflets which helped us to understand Fearne’s condition. I then contacted the Foundation who were by our family’s side at a really difficult time.  

“After several banding procedures and more severe bleeds, Fearne underwent major surgery in 2022 to bypass the blood clot in her portal vein. Happily, it was a success and now she is keeping well and attends our local hospital in Dundee for regular check-ups. 

“I know, however, that this charity will continue to be there for Fearne as she grows up and I’d like to think that any family who goes through what we did will have that support. It’s why we’re joining in with Big Yellow Friday on March 13.  

“We’re organising a coffee afternoon at Jars Community Hub in Brechin, from 3pm to 6pm. There will be a raffle, face painting for the children, a poetry reading from my friend, and a spiritual medium offering readings. 

“Fearne attends Maisondieu Primary School in Brechin who are fundraising for several charities that day, and we’re delighted that Big Yellow Friday is one of the causes they are supporting. We just want as many people as possible to join in, have fun and raise funds for a charity who really are there for families in their hour of need.” 

Michelle Wilkins, Head of Children and Families Services at British Liver Trust, commented: “We’ve been supporting Fearne and her family for several years now so the fact that she and Susan are joining in with Big Yellow Friday means a lot to us. It’s also brilliant that her school are joining in, as a supportive school environment makes a huge difference to a child with a liver condition. The funds they raise on the day will help us make a real difference to young people and their families around the UK and we can’t wait to hear how it all goes!” 

You can support Big Yellow Friday by going to Big Yellow Friday | Children’s Liver Disease Foundation 

 

 

Members of a bowling club in Romford have raised £2221 to support children and young people with rare liver diseases. St Chads Bowling Club have been fundraising for Children’s Liver Disease Foundation (CLDF) over the past year, having heard about the work of the charity through club members, Chris and Karen Cavanagh. 

“Our granddaughter, Cydney who is now 10, developed a rare liver disease when she was just two months old,” explains Chris. “She required major surgery when she was just seven months old and over the years has undergone several more operations and procedures. Children’s Liver Disease Foundation have been there with information and support for our family from day one. Cydney will need more treatment throughout her life, and it is a comfort to us knowing that she will always be able to count on their support. 

“The charity was a natural choice for St Chads to support, particularly as Cydney is a familiar face at the club. Over the past 12 months, we’ve held several social events, including bingo, karaoke and race nights, and have raffled off six fantastic hampers. We’re delighted to have raised £2221 for a cause which is so very close to our hearts and our newly elected club President, Pat Little, was delighted that her first official duty was to present the cheque to Cydney!”     

“Many people don’t realise that liver disease is something which affects babies and children,” says Michelle Wilkins, Head of Children’s and Families Services at CLDF, which has now merged with the British Liver Trust to bring children’s and adult liver support services together. “But every year in the UK, around 400 children are diagnosed with a condition for which there is still no cure. A diagnosis means a lifetime of medical care and the effect on families is devastating. 

“We provide those young people and their families with information, emotional support and a united voice. So, we’re very grateful to St Chads Bowling Club for this fantastic fundraising. The money they have raised will enable us to continue with this support for families like Cydney’s throughout the UK.”  

 

 

Organ Donation Week (September 22 – 28) begins today and a 13-year-old boy from Ossett has more reason to mark it than most, as he celebrates the 10th anniversary of his life-saving liver transplant.  

Freddie was born with Alagille syndrome, a rare genetic condition which occurs in around 1 in 30,000 live births. It can affect different parts of the body including the liver, heart, kidneys, eyes, face and bones. In Freddie’s case, it was his liver which was initially worst affected. 

“Freddie was six months old when he was diagnosed with Alagilles” says his mum, Emma. “It was very tough news to take. His dad, Phil, and I had already been researching the possible reasons why he was failing to thrive, and we knew how serious this condition was.”  

 Despite expert care at Leeds Children’s Hospital, Freddie’s condition was deteriorating and when he was two and a half, he was listed for a liver transplant.  

 “We knew that time was of the essence but also that there was a shortage of organ donors,” says Emma. “So, several of us in the family put ourselves forward to be a living donor and Phil’s cousin, Chloe, turned out to be the best match. 

  “It was an amazing thing to do. She passed all the relevant tests, and the operation was booked. But five days before surgery was due to took place, we got the call to say that a donor liver had been found. And on September 21st 2015, five days after his third birthday, Freddie got his gift of life in a nine-hour operation.”  

 Although his liver transplant was a success, Freddie’s troubles were far from over. Six months later, he underwent open heart surgery, and three months after that, he became seriously ill with sepsis and pneumonia. 

 

A dad of two from Kempston completed the Great North Run last Sunday, raising over £1400 for the British Liver Trust, a cause very close to his heart.  

 

Jonny Torn, a 38 year old  firefighter lost his beloved mother-in-law to liver disease earlier this year, an event which he says has “rocked and reshaped our family.” 

 “I wanted to do something positive in her memory. I’d done the Great North Run last year so knew what an amazing event it is, so to do it again and raise funds for a cause which is now so important to us seemed the right thing to do. Once again it was an incredible experience It’s such a well-run and well supported event, the people of Newcastle are so enthusiastic and are lining the streets cheering from start to finish. That certainly helps when you’re flagging or as in my case, you have a cold! 

“I was pleased to battle through and finish in one hour 57, but most of all I’m delighted to have raised so much. Aileen was loved by everyone who met her, and I think that’s reflected in the support I received – it feels like a fitting tribute to her.” 

 “Audrey Cornelius, Director of Fundraising at the British Liver Trust said: “As a charity, we are leading the fight against liver disease and liver cancer. We reach over two million people each year; providing information and support to patients and families and providing vital advice to help people improve their liver health. But there is still so much to be done. Liver disease is the only major disease in the UK where death rates are rising, and we want to change that. We’re so grateful to Jonny for this fantastic fundraising effort. What a wonderful tribute to his mother-in-law.”  

You can still support Jonny’s Great North Run at British Liver Trust: Jonny’s fundraising page in memory of Aileen Green 

 

Twenty-four-year-old Ciara Healy is excited to be off travelling next month. But as someone who has lived in Newcastle for six years, there’s one thing she has to do before she leaves and that’s the Great North Run this Sunday! 

“It’s such an iconic event in Newcastle, I had to do it, even though I’ve never done a half marathon before,” explains Ciara, who has a very special motivation. 

“I was born with biliary atresia, a rare and life-threatening liver disease. My diagnosis was a very scary time for my parents who knew little about this condition. When I was just a few weeks old and still in hospital, we were visited by someone from Children’s Liver Disease Foundation who provided much needed information and support. 

“That support continued as I grew up. Fortunately, I have received excellent medical care, and my health has been good but biliary atresia is a lifelong condition and it’s important that all families in our situation receive the help which we did. 

“So doing the Great North Run for Children’s Liver Disease Foundation is very important to me. It’s my way of giving back. I’m delighted to have already smashed my £500 fundraising target and now want to raise as much as I can. This time last year I couldn’t even run for 30 minutes so there’s no way I could commit to putting myself through 13.1 miles for something I wasn’t passionate about!  

“I think my liver condition has shaped who I am a lot so supporting this cause makes it even more meaningful. I don’t have a target time – if I can run it without walking or stopping and raise funds for a cause so close to my heart, I’ll be happy!” 

“Many people don’t realise that liver disease is something which affects babies and children,” adds Michelle Wilkins, Head of Children’s and Families Services at Children’s Liver Disease Foundation, which has now merged with the British Liver Trust to bring children’s and adult liver support services together. “But every year in the UK, around 400 children are diagnosed with a condition for which there is still no cure. A diagnosis means a lifetime of medical care and the effect on families is devastating. 

“We provide those young people and their families with information, emotional support and a united voice. It’s wonderful that Ciara wants to give back in this way and truly inspiring that she is able to. We hope the Great North Run is a fantastic experience and wish her all the best for the day.”  

You can support Ciara’s Great North Run challenge at   Ciara Healy is fundraising for British Liver Trust 

 

 

A 17-year-old boy from Kingswinford, who was born with a rare liver disease and received a life-saving transplant a few days before his third birthday, is heading to Germany this weekend to take part in the World Transplant Games in Dresden. 

 

Kristof, a student at King Edward VI College, Stourbridge, has had the perfect warm-up for the event, having scooped five gold medals at the British Transplant Games which took place in Oxford earlier this month. 

“I’ll be competing in table tennis, tennis, and badminton and I’m particularly looking forward to table tennis as that’s my favourite sport and the one I play most during the year,” he says. For Kristof however, like many Transplant Games competitors, the event is about more than sport. 

“The competition side of things is fun as it’s always a great feeling when you win a match but the thing I like the most is the opportunity to meet new people who share the same love of sport as you and also meeting old friends who maybe you haven’t seen since last year’s Transplant Games,” he explains. “My team is also very welcoming and are just a nice group to be around, with all of us sharing different journeys we’ve had to reach this point.” 

The forthcoming world games mark a milestone for Kristof as it will be his last representing Birmingham Children’s Hospital where he received his liver transplant 14 years ago.  

“Next year, I am looking forward to competing for the new adults’ team that I will be joining at the Queen Elizabeth Hospital, Birmingham,” he says. “I’ve been lucky to be well since my transplant, and I make sure I stay as healthy as I can by exercising regularly. I feel very lucky and honoured to have the opportunity to travel around the world playing sport and I aim to do this for as long as I can.” 

Outside transplant sport, Kristof has been selected to play in the Table Tennis Youth British Club League, and after next year’s A-Levels, hopes to study a sport related subject at university. 

 “Kristof is an inspiration,” says Michelle Wilkins of Children’s Liver Disease Foundation, who have provided his family with information and support over the years. “We support many young people who live with liver disease or have undergone a transplant and it’s wonderful for them to see that this diagnosis need not stop you living a very healthy and active life. We were excited to cheer him on at the British Transplant Games and we wish him all the best for the World Games which I’ve no doubt will be an amazing experience for him and his family.”  

 

A 14-year-old boy from Shrewsbury will be heading for the British Transplant Games in Oxford this week, just six months after undergoing a liver transplant. The surgery, which took place at Birmingham Children’s Hospital, was the third transplant for Harry who was born with the rare liver disease, biliary atresia. All the signs are that this one has been a success, and he is now keen to embrace everything life has to offer, as a way of honouring his donors.    

“I love going to the Games and was devastated when we couldn’t go last year when I was awaiting my liver transplant,” explains Harry. “It makes me even more excited to attend this year, represent my hospital team and show how well I’ve recovered!  I’ll be taking part in three swimming events as well as the long jump.” 

For parents, Simon and Clare, Harry’s enthusiasm for the Games demonstrates just how far he has come in a short space of time: 

“Harry’s had a really tough year with repeated infections, treatments and surgery. At times he was unable to get out of bed,” says Simon. “So to see him practising in the pool and hear him talking about the Games is astonishing. It’s hard to describe how good it is and how grateful we are to be able to head back. 

 

A 12-year-old boy from Ferndown is heading to Oxford at the British Transplant Games later this month. It will be the third time Albie has competed in the Games since undergoing a life-saving transplant after suffering acute liver failure in 2021. 

 

Albie, who has always been sporty will be taking part in the tennis, table tennis, football and athletics competitions and will be joined by his mum and three brothers for the donor run, a huge celebration of the gift of organ donation. 

The event has become a fixture in the family’s calendar since Albie received his liver transplant.  

“It gives us a chance to celebrate him and how brave he is,” explains mum, Verity. “He gets to be with other children who take the same immunosuppressant medication, who have to deal with hospitals and tests on a regular basis and who all have massive scars. He’s no longer the odd one out, like he is in his everyday life. It’s great for me as a parent and his brothers to be with other parents and siblings who have to care for a transplanted child, to share stories and advice. And it’s really encouraging for me to see older children and adults who have gone on to lead a normal healthy life after a liver transplant. 

“We’ll also get to catch up with the team from Children’s Liver Disease Foundation who have provided us with information and support since Albie received his transplant. It’s important in these situations to know that you’re not alone.”
 

“The Transplant Games is a wonderful example of what organ donation really means,” said Michelle Wilkins, Head of Children’s and Families Services at Children’s Liver Disease Foundation, which has now merged with the British Liver Trust to bring children’s and adult liver support services together. “We’re really looking forward to catching up with families we have supported over many years and seeing the fantastic progress their children have made. We know how much Albie loves his sport, so we have high hopes we’ll be celebrating some medals!”