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Mother's rare illness stops stomach, faces grim prognosis
14 Nov
Summary
- A mother-of-three's stomach stopped working, causing severe weight loss.
- Her life-saving treatment is unavailable on the NHS, costing £675 daily.
- She is seeking treatment abroad with only an estimated year left to live.
A mother-of-three, Emilie Cullum, is facing the possibility of not surviving another year due to a rare gastric condition that caused her stomach to stop working.
Her health dramatically declined after November 2024 when she began throwing up food. Initially dismissed by NHS doctors as food poisoning or Crohn's disease, she was later diagnosed by a private doctor in February 2025 with a "broken" stomach. This led to her requiring a feeding tube, which dislodged frequently, causing further weight loss and health complications including a pulmonary embolism.
By August 2025, Ms Cullum weighed just over four stone. Despite attempts to gain weight through formula feeding, her body rejected it. A second opinion confirmed she would die without a permanent feeding tube, a procedure she survived. However, further weight gain proved impossible.
In February 2026, her heart and kidney began to deteriorate. Total parenteral nutrition (TPN) was initiated, but resulted in another pulmonary embolism. She was then informed she had an estimated 18 months to live, with palliative care being the next step.
Her family discovered a gastric pacemaker treatment, available in Scotland, Wales, and Northern Ireland, but only privately in England. Currently, a lipid treatment costing £675 per day privately is her only option for gaining weight. Ms Cullum and her family are now pooling funds, including selling pets, businesses, and homes, to travel to Thailand for a year of lipid treatment, at a cost of £9 per day there, before returning for a gastric pacemaker.
She expressed a profound desire to live to see her children grow up. The family faces significant financial hurdles, including £58,000 for visas alone, to pursue this life-saving treatment.
