HEALTH
Rare diseases
A 5-year-old’s stomachache was the first sign of rare, deadly disease
Jeanine SantucciUSA TODAY
July 31, 2026, 6:06 a.m. ET
A family vacation to Oregon turned tragic when a 5-year-old died of an extremely rare health condition that came on suddenly in early July, the boy’s family told news outlets
Justin Vu, a soon-to-be kindergartener, his mom and sisters had traveled from their home in Denver and were enjoying a visit with family filled with trips to places like the beach and zoo,KGW News reported. Justin began complaining of a stomachache the night of July 3, his mother Terese Peden told the outlet
At first, Peden said she thought it was a “normal” illness, but Justin spent the night vomiting, and the family took him to a nearby emergency room the next morning
Doctors first thought Justin could have appendicitis or a bacterial infection, KGW reported, but it turned out to be something much more sinister, and virtually unheard of in children. Soon, on July 5, doctors told his family he had to be put on life support and only had a 50/50 chance of survival, Peden told KGW
The diagnosis was Clarkson’s disease. Also called systemic capillary leak syndrome, the diagnosis has been recorded in only about 300 adults since it was first documented in 1958, according to Dr. Richard Pierce of the Yale School of Medicine. There have been only 30 cases among children since the first case was recorded in 1995 in a Canadian girl who died of the condition at age 9, Pierce said in a university publication
“We were informed that his body was dying, and those medications were not going to be enough,” Peden said. Justin was surrounded by family members when he died on July 8, Peden told KGW
An online fundraiser for the family has raised nearly $45,000
Justin Vu was a sweet boy who loved to play
Justin loved Pokémon, dinosaurs and sharks, his parents told KDVR
“He had a contagious smile, and filled every room with his laughter and endless energy. Some of his happiest moments were spent playing with his siblings and cousins, creating memories that his family will cherish forever,” said a fundraiser for the family
As Justin’s condition worsened, family flew in from Colorado to be with him in his final moments
“We’re trying to figure out what life looks like now and taking it day by day,” Peden told KDVR
Viet Vu, Justin’s father, told the outlet he has a message for other parents: “Don’t take it for granted,” Viet Vu said. “Try to cherish every moment you have with them. Every hug and every kiss because you don’t know when it’s going to be the last time.”
What is Clarkson’s disease?
Clarkson’s disease is also known as primary capillary leak syndrome or systemic capillary leak syndrome, according to the Cleveland Clinic. It happens when plasma leaks out of the blood vessels into muscles, tissues, organs and body cavities, causing hypovolemic shock. It can happen suddenly, and leads to a sudden drop in blood pressure that can cause organ failure and death if untreated
Among adults, the condition usually happens in middle age, with an average diagnosis age of 42, Pierce said. But for children, the average age for diagnosis is 5.5, he said
Because the condition is so rare and presents with symptoms that may have other causes, it’s difficult to diagnose. It’s likely underdiagnosed in children because of lack of awareness by providers, Pierce said
Children typically present with edema (swelling because of fluid buildup) and distributive shock (a medical emergency where enough blood can’t get to the organs) when they arrive at an emergency room, Pierce said. The child will usually have been previously healthy but went through two to three days of symptoms that signal the first phase of a “leak episode,” which can last between one day and a week, he said
Those early symptoms can include abdominal pain, a lowered appetite, nausea, myalgia (muscle aches or pains) and fever, he said. They also might have a history of unexplained edema episodes. There are also no allergies or other environmental factors to explain edema. A medical exam may find high heart rate, low blood pressure and unusual heart and lung sounds, Pierce said
There is no known cure or definite cause of Clarkson’s disease, and there aren’t specific treatments for a leak episode, but Pierce said there are treatments that can help manage an episode as well as long-term therapies for preventing future leak episodes. Intravenous immunoglobulin has been effective in adults, he said
