WHEN Leila Evans first noticed a lump on her daughter Nansi Alys’ toe, she was told it was just a wart. For more than a year, doctors reassured her it was nothing more than a benign growth.
But Leila, from Criccieth, couldn't shake the feeling that something was wrong.
Her instincts were correct - what had been misdiagnosed as a wart turned out to be an incredibly rare form of cancer, affecting only six people per million.
Leila first took her daughter, then aged three, to see a GP in May 2021. She was initially told the growth was a wart, but Leila was unconvinced, and the lump kept growing.
In June 2022, another GP said it was a benign cyst. In July 2023, Nansi Alys had an operation at Alder Hey Children’s Hospital in Liverpool to remove the growth.
Tests were then carried out on what had been cut off to determine what it was. After a six-week wait, the family was told that Nansi Alys had desmoid-type fibromatosis, a rare type of soft tissue sarcoma cancer.
Medics told the family that part of the tumour still needed to be removed, and Nansi Alys required a second procedure and skin graft in September 2023.
Nansi's tumour in 2022 (Image: Submitted)
After this, some of the tumour still remained, and Nansi Alys, who has an older sister and brother, now has scans to monitor any changes to her health.
Leila said: “My daughter was misdiagnosed for over a year. I said to the doctors, ‘Are you sure it is a wart?’ It just didn’t look like one to me.
“The doctors should have listened to me. I’m her mother, and a mother knows best.”
Despite her illness, Nansi Alys, now seven, has kept up to date with her schooling and has been amazingly brave.
Leila said: “When we were told it was cancer, everyone in the family was panicking and teary. But we’ve all had to just get on with it for her sake.
“She has been so good, she’s not complained about any part of it. She is our little trooper, our little warrior.
“When she saw her friends after her first operation, she told them: ‘I’ve had my little ball removed’.”
On Saturday (August 17), Leila will be part of a team of ten family members climbing Yr Wyddfa to raise funds for the charity Sarcoma UK.
“We wanted to go up there for a good cause, so what better cause than Nansi and Sarcoma UK?” said Leila.
Her entire town has got behind the family’s fundraising efforts, with collection boxes placed in pubs and shops.
To donate to her appeal, go to www.justgiving.com/page/leila-evans-1711457084499.
Kerry Reeves Kneip, Sarcoma UK’s director of fundraising and communications, said: “This story is a powerful reminder of the importance of listening to patients and their families.
“Leila’s determination to seek the right diagnosis for her daughter highlights the need for greater awareness and understanding of rare cancers like sarcoma.
“It underscores the critical need for medical professionals to be better trained in recognising and diagnosing sarcoma early.
“At Sarcoma UK, we’re inspired by the Evans’ family’s courage, and we’re incredibly grateful for their efforts to raise both awareness and funds, which will help us continue our vital work in improving early diagnosis and treatment for those affected by sarcoma.”
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