Five-year-old dies on Oregon vacation after rare disease follows stomach pain
A five-year-old boy from Denver died while on a family vacation in Oregon after a stomachache was later identified as the rare disorder Systemic Capillary Leak Syndrome. He spent five days in hospital before succumbing.
Denver residents Terese Peden, Viet Vu and their five-year-old son, Justin Vu, traveled to Oregon in late June to see family. On the fourth day of the trip the boy complained of a stomachache that soon turned into nausea and marked lethargy, prompting his mother to seek emergency care on July 3. Initial assessments at a local hospital suggested an appendicitis problem, leading to his transfer to Portland Children’s Hospital where he was admitted to the intensive-care unit and placed on life support.
Physicians eventually identified the cause as Systemic Capillary Leak Syndrome, known as Clarkson’s disease, a disorder in which plasma leaks from capillaries into surrounding tissue, causing severe swelling and a drop in blood pressure. The disease is exceptionally rare, with fewer than five hundred documented cases globally since the 1960s. Despite intensive treatment, Justin died after five days in the hospital. His parents described the experience as a devastating loss and highlighted the challenges of diagnosing such an uncommon condition.
Why it matters
The case highlights the danger of rare, hard-to-diagnose illnesses like Clarkson’s disease, underscoring challenges for families and clinicians.
In this story