When Connor Armstrong was diagnosed with autoimmune liver disease at the age of 15, he wasn’t sure what the future held for him. Now the 22-year-old from Oldbury is fit and active and will be running the Birmingham Black Country Half Marathon (July 4) to raise funds for the charity who helped him come to terms with his diagnosis. 

“Being told at 15 that I had a chronic liver disease was obviously something of a shock,” says Connor, a trainee CNC operator. “I had no idea what to expect or how bad it could get. I was missing school for hospital appointments when my exams were looming and the side effects from the medicines affected my confidence both at school and in life generally. 

“Fortunately, I was put in touch with Children’s Liver Disease Foundation (now merged with the British Liver Trust) and the team there had plenty of information and advice on how to cope. I’m deeply grateful for how they helped me and for their work in raising awareness and understanding of liver disease. Many people are completely unaware of the challenges faced by those of us who live with these conditions, and I felt that the time was right to help change that and to give something back. 

“I’m fortunate that my condition is now under control and my health is good. I play football for Boldmere St Michaels every Saturday and I also enjoy running. I’ve just done one half marathon to date, and I thought this would be a good opportunity to beat my time from that (one hour 45 minutes) and to raise funds and awareness for a cause which is incredibly personal to me.”     

Dan Painter Public Fundraising Manager at British Liver Trust commented: “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. It’s brilliant that Connor is now fit and well enough to take on this challenge for us. We’re very grateful for his support and wish him all the best for the day.”  

You can support Connor at  Connor Armstrong is fundraising for British Liver Trust 

Paul Wyatt, who will be taking part in the London Marathon later this month, is no stranger to the challenge of 26.2 miles. This event will be his sixth marathon overall, his third in his home city of London, and he is planning to complete all the world marathon majors by the end of 2027! This London Marathon, however, is particularly special, as he is fundraising for the British Liver Trust, a cause which is deeply personal to him. 

 

“Back in 2023, I raised over £2,000 for Children’s Liver Disease Foundation, a charity that has since merged with the British Liver Trust,” says Paul, a 36-year-old business advisor. “I knew about their work because my sister, Jenni, was diagnosed with auto-immune hepatitis as a child. Ten years ago, she underwent a life-saving liver transplant, and her courage and determination inspire me every day. On my wrist, I carry a constant reminder of her strength: the words “never never never give up,” tattooed alongside her initials. 

 

Oliva Bottomley has never wanted to let the fact that she has auto-immune hepatitis hold her back so on April 27, the 33-year-old from Wolverhampton will be taking on the London Marathon in a bid to raise £2000 for the British Liver Trust. 

 

“I was 13 years old and living in the US when I was diagnosed with AIH”, explains Olivia, an underwriting quality assurance analyst. “And although my condition has to be managed with daily medication, I am fortunate that I can pretty much get on with my life, but that’s not the case for everyone with liver disease. The London Marathon is something I’ve always wanted to do, and it’s brilliant to know that this challenge will help others in my situation. 

“From my point of view, the support groups and online community which the British Liver Trust provides are a real lifeline. Being diagnosed with such a serious condition and going through treatment is overwhelming, and even now I find it really helpful to be able to read other people’s experiences or speak to others who have gone through the same thing as me.” 

Olivia knew that preparing for the marathon would be  a real commitment: “It’s the perfect time in my life to do this as I am a homeowner with no children or pets, so I’ve had the time and resources to acquire everything I need in terms of trainers, running kit etc and also to do the training. I can’t imagine how I would do this if I had extra responsibilities! 

“Training has been tough – I’ve had a few shin and calf problems which have necessitated physio trips and also had flu which took me out of training for 11 days. Because of my AIH I’ve not been able to take anything to aid recovery as this would stimulate the immune system which is the last thing I need! So, I’ve had to do a lot of rest and listening to my body.    

“Now the big day is drawing near, I am both nervous and excited. This will be my first marathon and if I can complete it and hit my fundraising target for a cause which means so much to me, I’ll be delighted.”  

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. We’re so grateful to Olivia. It’s really inspiring to see her taking on the London Marathon to support us, despite managing her own liver condition, and we hope she really enjoys the occasion. We shall be there on the day cheering her on!”  

You can support Olivia’s London Marathon challenge at  British Liver Trust: Olivia’s page 

 

Most charities would consider themselves extremely fortunate to have Royalty running the London Marathon for them but that’s exactly what’s happening to the British Liver Trust! The Pearly Queen and Pearly Princess of Fulham will be running the marathon together in a bid to raise £2,000 for the charity which means a great deal to them.  

 

Pearly Queen, Gemma Blackie, discovered Children’s Liver Disease Foundation (CLDF) when her daughter, Daisy, now 24, was just 11 and had been diagnosed with auto-immune liver disease. “The charity provided a lifeline for us all as we came to terms with our new life with a child with a chronic condition,” says Gemma. “We received support through family days, camps, conferences and extensive research into childhood liver conditions. We continue to raise money for this wonderful charity so that other families, like our own, can benefit from all the amazing work they do and as London’s other royalty, running the Marathon in our pearls seemed a very fitting thing to do! 

 

A 13-year-old girl from Betley, who was born with a rare liver disease and received a transplant as a baby, will be taking on a four-day coast-to-coast cycle ride this weekend to raise funds to help other children affected.  

 

Imogen was just nine weeks old when she was diagnosed with the rare and life-threatening liver disease, biliary atresia. After five months on the transplant list, it became clear that urgent action was needed and her life was saved when her mum, Charlotte, donated half of her liver when Imogen was just a year old.  Now an active and sporty teenager, she is keen to give something back to Children’s Liver Disease Foundation (CLDF), who have provided her parents with information and support ever since her diagnosis.  

 

“Apart from blood tests every three months and a hospital check-up once a year, I live a normal and very active life,” says Imogen. “But I know that’s not the case everyone who is born with a liver disease. I’ve seen my dad take on fundraising challenges for CLDF and I also want to do something for other young people in my situation. 

“I love cycling and thought that a coast-to-coast ride would be a great way of raising money.” 

So this Friday May 2, Imogen, accompanied by her dad, Seb Daly, will be setting off from Cleethorpes and is planning to arrive in Hoylake on Monday May 5. The pair are hoping that, as well as raising much needed funds, their challenge will highlight the value of organ donation. 

“Imogen is a wonderful example of what organ donation really means,” says Seb. “And we’d like to think this challenge could encourage people to make their organ donation wishes known to their loved ones.”  

 

“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 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. So it’s wonderful that Imogen and Seb want to support us in this way. And seeing Imogen able to take on this challenge will give real hope to many of the families we support. We wish them both the very best of luck.” 

You can support Imogen’s Coast to Coast cycle challenge at   Sebastian Daly is fundraising for British Liver Trust 

 

A County Down church has raised over £2500 to support young people with liver disease by hosting a vintage car run. 

 Over 150 vehicles – some almost 100 years old– took part in the Carrowdore and Ballyfrenis Church vintage car run, a 25-mile cavalcade around the picturesque Ards peninsula, on August 2. The annual event raises money for good causes and this year the congregation chose Children’s Liver Disease Foundation (CLDF) as one of its members has a granddaughter who has a rare liver condition and has received support from the Foundation for a number of years. 

A brother and sister from Oakham, Rutland are eagerly looking forward to taking part in a major national sporting event next week. Eleven-year-old Wren and her ten-year-old brother Milo are heading to Nottingham to take part in the British Transplant Games, which takes place from August 1 – 4.  

 

 Both children were born with the rare liver disease, PFIC-2. Milo received a liver transplant when he was just two years old, and Wren was transplanted three years ago at the age of seven. This will be the second Transplant Games for the siblings who are competing in running, long jump, cycling and ball throw events. 

 “For all of us it is about meeting people who have been through the same things we have,” explains mum, Rachel Nealson. “Although Wren and Milo enjoy sport, there are things which disadvantage them compared with their non-transplant receiving competitors. For example, the fact that they are both still much smaller than average, so they really enjoy competing in a more level playing field. Our older daughter, Annabel, who is healthy, will be taking part in the sibling events so the whole event really is a great celebration of the gift of organ donation.  

 “The Games will also be a chance to catch up with the team from Children’s Liver Disease Foundation. The charity was the first port of call when we needed sensible and assured information when the children were first diagnosed and we’ve always reached out to them when we can’t find an easy answer to a problem. 

” I met a CLDF representative at Kings before my first ever appointment there and it was nice to have someone explaining what would happen and what to expect when we were in this new and overwhelming environment. It gave me the knowledge needed to advocate for them properly. CLDF helped us find a grant from an international PFIC organisation for tutoring when the children fell behind academically due to Wren’s transplant occurring during lock down and shifting our focus from home schooling. They also organised a last-minute place for my Dad in last year’s Donor Run at the Transplant Games which made it easier to have him join us for a day. He has helped us so much with child care when children are in hospital so is a big part of transplants in our family.” 

 Michelle Wilkins, Head of Children’s and Families’ Services at Children’s Liver Disease Foundation commented: “The Transplant Games is a wonderful example of what organ donation really means. We shall be there as it’s a great opportunity to catch up with families we have supported over many years and see the fantastic progress their children have made. So we’ll definitely be cheering on Wren and Milo in their quest for medals!” 

   

Jamie Stanley from Tonbridge, who underwent a life-saving transplant, is gearing up to join hundreds of fellow transplant recipients at the British Transplant Games next week. 

 The 31-year-old, who received a liver transplant last year, is heading to Nottingham for the Games which take place from August 1 – 4. This will be the first time Jamie participates in the event, where he will compete in football and the 1500m. This achievement seemed unimaginable even 18 months ago. 

 “I was born with the rare liver disease, biliary atresia,” says Jamie. “I had surgery when I was three weeks old, which averted the need for a transplant at the time, but years down the line, I developed cirrhosis and then a clot in the portal vein on my liver, which led to my transplant last March. 

“Fitness has always been an interest of mine. I go to the gym four times a week and cycle to and from work and feel great for it. So the Transplant Games really appeals to me and I’m looking forward to it. I’m quite competitive anyway and believe this is a great cause. It’s vital to make people aware of the importance of being a donor and what a positive impact it can have on someone else’s life. It’s because of organ donation that I can enjoy my life with my partner Olivia and daughter Maia, and I’m so grateful to be here with them.“  

 

 

Sofia Barnett might only be 21 months old, but she’ll be taking part in a major sporting event this week. The toddler from Southampton who had a liver transplant last July is heading to Nottingham to take part in the British Transplant Games, which takes place from August 1 – 4.  

It’s a big occasion, not only for Sofia who’ll be competing in the 25m run, ball throw and bean bag archery, but for her family. 

 “Sofia was almost eight weeks old when she was diagnosed with the rare and life-threatening disease, biliary atresia,” explains her mum, Sarah. “Just a few days later she underwent surgery, known as a Kasai procedure, which can prevent the need for a transplant for many years, but sadly it failed and by the time she was four months old, she was being assessed for a liver transplant.  

  “At the assessment we were told she had 3-12 months to live without a transplant. We knew there was a shortage of organ donors, so we were keen to explore the live donor route. Luckily her dad, Pete, passed all the necessary tests and Sofia received part of his liver in July last year. 

 “Happily, both recovered really well and Sofia was discharged from hospital just two weeks after her operation. We’ve had ups and downs, she had some early rejection and has had lots of winter bugs but she’s doing absolutely amazing, it has completely changed our lives.  

  “We decided we wanted to go to the games after talking to the parents of other children who have Sofia’s condition. It will be so nice to be with lots of other people that understand what you’ve been through and other children with the same experiences as Sofia. As her condition is so rare, the only time we ever get to talk about it is in hospital so we’re looking forward to a weekend of fun this time!” 

 Michelle Wilkins, Head of Children’s and Families’ Services at Children’s Liver Disease Foundation, who provided Sofia’s family with information about her condition, commented: “The Transplant Games is a wonderful example of what organ donation really means.  We shall be there as it’s a great opportunity to catch up with families we have supported over many years and see the fantastic progress their children have made. So we’ll definitely be cheering on Sofia in her quest for medals!” 

A devoted aunty from Wythall spent her birthday weekend doing a Ben Nevis climb to raise funds for a charity very close to her heart. Sophie Bosworth, 31, was joined by 12 friends, family members and work colleagues on the August Bank Holiday Weekend hike, which has raised £8694 for Children’s Liver Disease Foundation, smashing her original £5k target.

 

The charity has been an important one to Sophie ever since her two-year- old niece, Nellie, was born with the rare condition, Alagille syndrome.

“Alagilles affects about one in every 30,000 babies,” explains Sophie. “The effects vary from one person to another, but it can affect the heart, kidneys, eyes and bones as well as the liver. My sister, Cara, was put in touch with Children’s Liver Disease Foundation, shortly after Nellie’s diagnosis and they have been there for her with information and support ever since.

“Nellie is doing brilliantly but she will continue to need the charity’s support as she grows up, her first operation is scheduled for October this year so that was also in the back of my mind the whole time. I wanted to take on a special fundraising challenge to celebrate my birthday and thought that, even though it’s 400 miles away, it was only right to do the biggest mountain in the UK for Nel.“