A vibrant 22-year-old student, whose life was cut short by an exceptionally rare form of liver cancer, is being honoured through an extraordinary fundraising effort by her devoted brother.
A Sudden and Unexplained Illness
Charlotte Savill was a healthy and sociable young woman, living her dream while studying marketing at Florida State University in the United States. However, during her second year, the then 21-year-old began experiencing disturbing health issues. She started feeling severely unwell every time she consumed alcohol.
Her condition progressively worsened, eventually causing sickness even when she ate food. The situation became so dire on one occasion that Charlotte was forced to call 911 for emergency assistance.
Following this incident, medical professionals delivered the devastating diagnosis: Charlotte was battling Fibrolamellar carcinoma, a rare liver cancer that affects approximately one in five million people.
Her brother, Tom Savill, 28, recalled, "Everyone would say Charlotte was the life and soul of the party. The issues with alcohol and food had been affecting her for about nine months."
"She was often sick and the doctors initially thought it was something simple like acid reflux or a gastro problem. When they finally gave her a CT scan, a 15cm tumour was found on her liver. It weighed 15lb and she was 100lb at the time."
The Challenge of a Rare Disease
Fibrolamellar carcinoma is an aggressive form of cancer that typically strikes young, otherwise healthy individuals between the ages of 13 and 25. The disease is notoriously difficult to detect in its early stages, often presenting no symptoms, and is sometimes misdiagnosed as conditions like Crohn's disease or lactose intolerance.
Life expectancy following a diagnosis is typically around one year, and the cancer can be resistant to conventional treatments like chemotherapy and immunotherapy.
Charlotte underwent surgery to remove the massive tumour, but the cancer had already spread to her lung, placing it at stage four.
"Despite the most awful prognosis, Charlotte never lost her positivity," said Tom, who is a director at Plumpton Racecourse, owned by his father, Peter, a former chairman of the British Horseracing Board.
"People would meet her and they had no idea she was ill. She had chemotherapy and immunotherapy, but neither of them worked. It was such a lot to deal with and she was so brave."
A Legacy of Courage and a Brother's Promise
Diagnosed in May 2023, Charlotte fought a courageous 16-month battle with the disease before passing away in August 2024 after moving back to the family home in Wicklow, Ireland.
Tom shared a poignant insight into his sister's spirit, stating, "Charlotte said to dad that in many ways the last year was the best one of her life. She visited Deauville and Tuscany, attended a David Gray concert and the Electric Picnic music festival in Ireland."
"We had a picture taken on one of the trips two months before she died and she looked beautiful with a lovely smile. She didn't want people to treat her any differently. People say she was unlucky to have a rare cancer, but in so many ways we were lucky to have known her."
In her memory, Tom is now fulfilling a promise he made to his sister. Alongside his close friend, Joe Lush, also 28, Tom is close to completing a monumental 2,700km cycling challenge from Morocco to Plumpton Racecourse in East Sussex.
The pair set off on October 26, averaging seven hours of cycling per day on their gravel bikes and staying in Airbnb properties along the route. They are due to begin the final leg of their journey on Monday, November 17, which will culminate at the racecourse for the Charlotte Savill Memorial Raceday.
"I promised Charlotte I would do something like this," Tom explained. "It was going to be an Ironman but I broke my foot playing rugby last year and had to stick to low impact exercise. We will have done 23 days of cycling by the time we reach the finish line."
The primary goal of this immense physical endeavour is to raise as much money as possible through their online fundraising page. The funds will support vital research into Fibrolamellar carcinoma, a field that is critically underfunded.
Tom emphasised their mission, saying, "Fibrolamellar research is underfunded, so we wanted to do what we can to help towards one day finding a cure for it." The fundraising will aid scientists like Dr Sandy Simon, whose own daughter, Elana, was diagnosed with the same cancer in 2008 and survived because the disease had not spread.
