My outgoing, active daughter is now dying before my eyes after mistaking fatal heart condition for bloating
The 25-year-old is now bedridden and unable to eat after a five-year-long 'fight' with a rare vascular disorder that's slowly killing her.
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Charlotte, once a "lively" and "outgoing" student with dreams of becoming a police officer, has been diagnosed with superior mesenteric artery (SMA) syndrome, a devastating condition where one of her major arteries is crushing her intestine.
She first believed her symptoms were down to bloating from excessive gym training, but they gradually worsened over time, leaving her unable to keep food down and dangerously underweight.
Now, her mum Leanne Bennett, 46, said she is 'watching her [daughter] slowly die' and is desperately fundraising for a life-saving operation in the US.
Charlotte, from Earith, Cambridgeshire, has suffered multiple bowel obstructions, constant vomiting, and now relies on a nasogastric (NG) tube to survive.
She's been in and out of hospital since her early twenties, spending a staggering 47 out of the last 60 months in a hospital bed.
Her condition is so rare that UK doctors failed to recognise it for years, and she was only diagnosed after her mum sought the help of a private radiologist.
Leanne said: 'Charlotte is dying before my eyes, her body is just slowing down.
'Because SMA is so rare, doctors in the UK have little understanding about it – and she hasn't been offered the new surgery to correct it.
'The Alvear procedure is so new, it isn't yet available on the NHS.
'To be honest, she's been presenting with symptoms, like a distended stomach, from a fairly young age, but I always put it down to growth spurts.'
Charlotte was a sporty teen who began gymnastics at 13, and Leanne said she was constantly on the go, never one to sit still.
But even then, she often complained of feeling sick and bloated, which her family chalked up to childhood bugs or hormonal changes.
It wasn't until she was 20 that the symptoms suddenly took a darker turn, with Charlotte experiencing a mysterious pain on her right side.
'In February 2020, doctors whipped her appendix out in the hope it would stop her pain,' Leanne said.
'But it only got worse."
She added: 'We started taking her to hospital every other month, because it was always something, pain, massive stomach distension, being sick and, eventually, malnutrition.
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'In the last 60 months, she has spent 47 of them in a hospital bed.'
Despite dozens of tests, Charlotte's care team couldn't pinpoint what was wrong, but confirmed she was dangerously malnourished.
By 2021, she was fitted with a nasogastric (NG) tube to keep her alive, and her family feared the worst.
Refusing to give up, Leanne paid to see a private radiologist, who finally confirmed Charlotte had SMA syndrome, a condition that affects only 0.3 per cent of people in the US and an unknown number in the UK.
I wouldn't wish this on anybody, I just want a normal life - and I don't think that's asking much
Chalotte Kent25
He told them the only way to save her would be a cutting-edge op called the Alvear procedure, which untwists and repositions the duodenum.
The surgery isn't yet offered on the NHS and can cost upwards of £30,000 privately in the US.
Leanne said: 'It's such a short procedure, it only takes one-to-two hours, if everything goes well – and it could save Charlotte's life.
'It's her only hope.'
What is superior mesenteric artery (SMA) syndrome?
SMA syndrome is a rare digestive condition where part of your small intestine, called the duodenum, gets crushed between two major arteries in your belly: the abdominal aorta and the superior mesenteric artery.
This crushing effect causes a blockage, making it difficult or impossible for food to pass through the gut.
Over time, this can lead to severe malnutrition, vomiting, and weight loss, and in some cases, can be life-threatening.
SMA syndrome is more likely to affect people who have lost weight rapidly or have very little fat cushioning between their organs.
Symptoms you might notice include:
Feeling full very quickly after eating
Constant bloating or a distended stomach
Nausea and vomiting
Severe abdominal pain
Difficulty keeping food down
Ongoing weight loss
Source: Cleveland Clinic, NHS, National Library of Medicine
She's now racing to find a UK-based surgeon who could offer the same treatment, to spare Charlotte the risks of travelling in her fragile state.
Meanwhile, Charlotte says she feels stuck while the rest of the world moves on.
She said: 'I have been struggling for way too long with the illness.
'It's really hard to deal with day-to-day.
'I feel like my life has stopped, the world continues to go round and I'm stuck in the same place.
"I wouldn't wish this on anybody, I just want a normal life - and I don't think that's asking much."
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