Emilie Cullum, Mother Left Weighing Four Stone, Needs £675-a-Day Care
Emilie Cullum, a mother of three, says she may not live another year after a rare gastric condition stopped her stomach working. Her weight fell to four stone, and the treatment she needs is unavailable on the NHS and costs £675 a day privately.
Emilie Cullum, a mother of three, says she may not live another year after a rare gastric condition stopped her stomach working and her weight fell to four stone. The treatment she needs is not available on the NHS, the UK's National Health Service, and costs £675 a day in private healthcare.
Cullum had been healthy and physically active before November 2024. Then she threw up her breakfast cereal one morning, and her life changed overnight.
“It wasn’t like I felt ill or anything - I just thought it was odd,” she said. She was sick again after lunch at work.
Over the next week she vomited after every meal. She also developed sore ribs, acid reflux and a painful throat.
It took another three months for a private doctor to realize her stomach had stopped working completely. In the meantime, she said, NHS doctors told her during several hospital visits that she likely had food poisoning or Crohn's disease.
In February 2025 she had a series of tests, including swallowing chalk and a camera. She threw up both. A specialist told her that her stomach was “broken” and that she would need feeding through a tube in her nose.
The tube kept dislodging when she vomited. Cullum had to replace it 14 times over six months, and each time she was sedated.
“I was just losing more and more weight,” she said. “By 8 August, I was four stone and three pounds - I’d lost half my body weight.”
Doctors told her she needed to gain weight before she could have a permanent tube. She could not, because her body kept rejecting the baby formula she was fed.
“I was on death’s door by then,” she said. She described episodes in which she slept for three days, and said her mother called an ambulance when she could not be woken. She was nearly in cardiac arrest.
A second doctor concluded she would die without a permanent tube stitched into her body. The procedure itself carried a risk of death.
She survived and gained almost a stone, reaching five stone five pounds. That is still extremely underweight, she said. “If you get things like an infection or a cough, you’re dead in bed for three weeks.”
The permanent tube worked at first, but she could not gain more weight because her body rejected larger amounts of formula. In February 2026 she was told her body could no longer keep going, as her heart and kidneys began to deteriorate.
Doctors decided she should have total parenteral nutrition (TPN) as a hospital inpatient. A bag of nutrients was fed into her veins through a cannula. It helped at first, but she then suffered a major pulmonary embolism, a blood clot in the lungs, after clotting around an artery. She needed a blood transfusion.
Cullum was then told the next step would be palliative care and pain management. She was told she was unlikely to live longer than 18 months.
“It was just a shock, hearing those words,” she said.
