A Colorado family is mourning the sudden death of their 5-year-old son after what began as a stomachache during a family vacation turned out to be an extremely rare and life-threatening disease.
“Five days in the hospital and he was gone,” Justin Vu’s grieving mother, Terese Peden, told FOX 8.
Peden, her husband, Viet Vu, and their children had traveled from Denver to Oregon in late June to visit relatives.
Four days into the trip, Justin began complaining that his stomach hurt. His symptoms quickly became more alarming as he developed nausea and became extremely tired and weak.
Peden took him to the hospital on July 3, but his condition continued to deteriorate.
Doctors were initially unsure what was wrong and suspected that Justin might be suffering from appendicitis. He was transferred to a children’s hospital in Portland, where he was admitted to the intensive care unit and placed on life support.
After days of testing, doctors diagnosed Justin with Systemic Capillary Leak Syndrome, also known as Clarkson’s disease.
The extremely rare condition causes plasma to leak from small blood vessels into surrounding tissue. The leakage can trigger severe swelling, dangerously low blood pressure and organ failure.
Justin died on July 8, just five days after he was first taken to the hospital.
Fewer than 500 cases of Clarkson’s disease have been reported worldwide since the 1960s, according to the National Organization for Rare Disorders. The illness is considered even more unusual in children.
Justin’s sudden death has left his family struggling to understand how their healthy little boy could be gone so quickly.
“We’re trying to figure out what life looks like now and taking it day by day,” Peden told FOX 31.
She said the family remained hopeful throughout Justin’s hospital stay and refused to believe they would have to leave without him.
“We kind of had a mentality that we weren’t leaving there without him, and so we really just fought,” she said. “Us and our whole family were Team Justin, and we held out hope until that next morning when they told us there was nothing they could really do.”
A GoFundMe created to help the family pay Justin’s medical and funeral expenses has already surpassed its original $35,000 goal.
In the wake of the tragedy, Justin’s father shared an emotional message for other parents.
“Don’t take it for granted. Try to cherish every moment you have with them,” Vu said.
“Every hug and every kiss, because you don’t know when it’s going to be the last time.”
