Boy's dying wish: 'I don't want to be forgotten'

A mother whose teenage son died from a rare form of cancer has been sharing his story to raise awareness of the symptoms and keep his memory alive.

Jake Swinscoe, from Salisbury in Wiltshire, died just two weeks before his 14th birthday in April 2024, 10 months after being diagnosed with alveolar rhabdomyosarcoma, an aggressive soft tissue cancer.

His mother Lynsey said before his diagnosis she thought Jake was suffering from hay fever and had no idea a runny nose and watery eyes "could be potential symptoms of cancer".

She said the thing Jake was scared about "wasn't dying" but not being remembered, telling his mum: "I want to be well-known and not forgotten".

Lynsey said her son was a typical "funny and cheeky" 13-year-old boy, who was really popular at school - "especially with the girls".

"I remember having to have a word with him once over the amount of dinner money he was spending," she said.

"It turned out he'd been buying all the girls cakes."

In 2023, in the run up to the summer school holidays, Lynsey started noticing Jake was falling asleep on the sofa straight after school.

"I put it down to - it was the end of the school term and he's just ready for the school break," she said.

"I didn't really feel like I had a reason to worry until he started to get a swelling across the bridge of his nose."

In July that year, Jake was diagnosed with stage three, fusion-positive alveolar rhabdomyosarcoma.

"It was really difficult to get our heads round because Jake had seemed so well up until that point," said Lynsey.

"It was really hard to imagine that he had a cancerous tumour actually the size that it was - the size of an egg."

Jake underwent nine rounds of chemotherapy and proton beam radiotherapy, but Lynsey said it was "really, really hard going" and he had "no energy at all", with the medication making him feel unwell.

When the cancer spread into the fluid around his brain and spinal cord, Jake "made the decision himself" to stop treatment, she said.

"He made what I think is the most brave decision in the world.

"I remember having a conversation with him where he told me that if he didn't have long to live then he'd rather live without constantly feeling tired and sickly."

Four weeks later, he died at home with his family by his side.

"The only thing that Jake was scared about really - it wasn't dying itself - it was the fact that he thought that he'd be forgotten," she said.

"So I promised him that he obviously will never be forgotten."

Determined to make sure Jake's story is remembered, Lynsey has joined forces with The Children & Young People's Cancer Association (CCLG) to help families and healthcare workers recognise the early signs of cancer.

According to the CCLG, cancer is the leading cause of death from disease among children aged 0-14 in the UK.

But research has shown that just one in three adults would feel confident recognising the signs and symptoms of childhood cancer.

Lynsey said she thought cancer symptoms "started with a lump".

"For Jake it was fatigue and hay fever and I had no idea that those could be potential symptoms of cancer," she said.

Sharing his story has been "a really lovely way to remember Jake and know that it's OK to talk about him and do good things in his memory", she added.

Follow BBC Wiltshire on Facebook, X and Instagram. Send your story ideas to us on email or via WhatsApp on 0800 313 4630.