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'Mum's sarcoma death taught us how to live'
LYING on a grassy bank in Cornwall with her family, Sarah Barlex, who had terminal cancer, made a wish on every shooting star she spotted.
“It was the last ever time Mum went there,” explains George, 14.
“It was a really clear night and she said she made a wish on every one. There were seven in total.
"She didn’t tell us what they were though because she said it wouldn’t work otherwise.”
Months later and just weeks before Christmas, the mum-of-two lost her battle aged just 41.
Now vowing to battle on in her memory, George, his family and friends have just one wish and they want to shout it from the rooftops.
They want to raise awareness of the rare cancer that claimed her life to save lives.
The Wyvern School pupil, said: “Mum always stayed so positive right to the end and always said something good has to come out of this.
“She told us to never give up.
George and Luke Barlex
"If we can help raise awareness of sarcoma to help just one person, if it improved someone’s life and their family’s life, that would make me a whole lot happier.”
Sarah first thought something was wrong when she laced up her dress on her 40th birthday party and felt a dull ache in her back.
Helen Smale, Sarah’s mum, explained: “As well as running her bridal hair and makeup business she worked in the school kitchen lifting heavy pots, so we all thought it was due to that, a pulled muscle.”
But in July 2012, when Sarah became breathless on the school run with her sons George and Luke, ten, her GP sent her to hospital for tests.
She was diagnosed with sarcoma – a type of cancer that develops in the body’s connective tissues such as muscle, nerves, bone, blood vessels and fat.
Sarah’s was so advanced there was fluid on her lung caused by a tumour in her diaphragm.
While the symptoms of sarcoma are common, the cancer is not. Around 12,000 people in the UK have sarcoma with 3,800 new cases diagnosed every year.
Helen, 64, says: “When she was first diagnosed and told me she had sarcoma, I said ‘what’s that?’ We all had no idea what it was.
“This cancer is silent and cowardly.
It creeps through soft tissue or bone, not touching vital organs so early diagnosis is hard.”
Just weeks after the diagnosis, Sarah was determined to make a difference and began a fundraising mission to raise vital awareness of the cancer including hosting a ball raising £3,000 and a head shave.
“She always kept so strong. She painted on her face, painted on her eyebrows, got false eyelashes when she lost those and smiled at the world,”Helen says.
But despite having more charity events planned, Sarah’s condition deteriorated and the cancer spread.
Eighteen months after she was diagnosed on December 14, Sarah lost her battle after getting pneumonia from a chest infection.
George, explains: “She never showed me or my brother signs she was going downhill. She never gave up.
There was never a moment she didn’t look after us. She was the best mum you could ask for, she was just always there when we needed her, she was more a best friend than a mum really and always put other people first.”
And her family and friends are now determined to continue to carry on her legacy.
Already Sarah’s 18-year-old cousin, Hannah Butler and her friend, Sam McCormick, 44, – have leapt 10,000 feet from a plane to raise £2,000 in a charity skydive.
Hannah, a care assistant who studies at Eastleigh College, says: “It was something Sarah was determined to do because she was frightened of flying. Sarah said she wanted to make everyone aware of sarcoma and it’s our right to carry that on and make other people aware.”
In the UK, sarcomas often go undiagnosed until they have grown to around 10cm in diameter. In comparison, at diagnosis the average size of a breast cancer is about 2.3cm, and a testicular lump about 4cm.
The five-year survival rate for sarcomas is about 55 per cent, and the family hope that would improve with earlier diagnosis.
"For us, it was a complete bolt out of the blue,” Helen, of Hedge End, says.
“We don’t want Sarah’s death to be in vain. I can’t help but think that, if we’d been aware of Sarcoma before Sarah was taken ill we may have taken her back pain more seriously.
“Raising the profile of Sarcoma will make people aware so they can get an early diagnosis and therefore save lives in the future.
“It’s not until they are not around anymore that you realise what a huge part of so many people’s lives she was. You don’t appreciate what there is until it’s taken away.”
For more information, visit sarcoma.org.uk
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