A 17-year-old from Wells who has an ultra-rare cancer has won a national award for using her experience and artwork to raise awareness of sarcoma.

Eva Rainey was named Young Sarcoma Voice of the Year at Sarcoma UK's Shining Star Awards in London on Monday, 2 November. The award was decided by a public vote.

Eva was 13 when doctors found a grapefruit-sized tumour beneath what had appeared to be an ordinary lump on her back. She was diagnosed with sclerosing epithelioid fibrosarcoma, a rare type of soft tissue sarcoma.

Surgeons removed parts of her ribs and spine to remove as much of the cancer as possible. Eva then had radiotherapy and two experimental drugs; the cancer had already spread to her lungs and later to her bones.

Eva has shared her experience through a Sarcoma UK film and national media coverage. Two of her paintings have been auctioned at charity events, raising £3,700 in total.

She received her award from TikTok creator Marshall Exler. Asked by host Angela Barnes how it felt to win, Eva said: "With cancer it's easy to feel you are alone, but you are not. I am proud to use my story, my voice and my art to raise awareness for this wonderful charity."

With limited treatment options for Eva's cancer type, her father Paul, a molecular biologist, has used his professional network to help her medical team secure two drugs on a compassionate-use basis. Neither is licensed in the UK for her cancer type, and Eva is currently receiving an experimental immunotherapy treatment which her family says is showing some positive signs.

"Eva has quite a dark sense of humour about what has happened to her, and I think that carries her through," Paul said. "She still has hope for the future and we don't want to take that from her."

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Paul has also helped raise money for sarcoma research. He and friends Tim Sherwell and Chris Burden cycled 1,000 miles from Land's End to John O'Groats as Team Eva.

"It would be great to raise some money so that some clinical trials could take place, if not for Eva then for someone in the future," he said.

Eva's grandmother Angela Williams has also held coffee and cake mornings to raise money for research. Last year, she took part in Sarcoma UK's 15km swimathon.

Kerry Reeves-Kneip, director of fundraising and communications at Sarcoma UK, said: "Eva has taken an experience no young person should have to face and used it to help others feel less alone. Her honesty, her artwork and her determination have shown the public how much research into ultra-rare sarcomas matters and it is wonderful that so many people chose to vote for her. We congratulate her and thank her and her family for everything they do."

Sarcomas are uncommon cancers that can affect different parts of the body, including muscle, bone, tendons, blood vessels and fatty tissue. There are around 100 subtypes.

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