A five-year-old boy died in early July at a children's hospital in Portland, Oregon, from a rare condition that causes plasma to leak from blood vessels into tissues. Justin Vu, who was visiting family from his home state of Colorado, was diagnosed with idiopathic systemic capillary leak syndrome (SCLS), also known as Clarkson's disease.
The condition leads to a rapid drop in blood pressure and organ failure, according to the Cleveland Clinic. SCLS has no cure and can be fatal, though its symptoms can be managed. The disease is exceptionally rare, affecting fewer than 500 people worldwide, and is primarily seen in adults, making its occurrence in children extremely uncommon.
Justin had been enjoying a family vacation, including visits to the zoo and the beach, when he began complaining of a stomachache. His mother, Terese Peden, initially took him to the hospital fearing appendicitis. His health rapidly deteriorated, and he was admitted to the intensive care unit.
His father, Viet Vu, wrote on Facebook that by the time he arrived in Portland, Justin was on life support. Doctors informed him they had not encountered a similar case in their careers. Vu described his son's body swelling significantly from the fluids administered to keep him alive, and that his organs began failing.
"My son fought as hard as he could until July 8th. By that time his organs were failing him. The Drs told us chances for recovery and survival were slim," Vu stated. "And at this point my boy wasn’t even recognizable. His face and his body were soooo swollen from the fluids they were putting in to keep him alive. To save him from a catastrophic event, the Drs advised us to decide how to let him go peacefully."
Justin died five days after being hospitalized. His family was with him, reading bedtime stories and taking him outside before he passed away. He was described as a "sweet and loving little boy" who enjoyed Pokémon, dinosaurs, and sharks, and who brought joy to those around him with his smile, laughter, and energy.
His parents are sharing Justin's story to raise awareness about Clarkson's disease. A GoFundMe fundraiser set up by a family friend to help cover funeral expenses and support the family in their grief had raised over $44,000 as of Thursday.
While the exact cause of SCLS remains unknown, symptoms that may precede an attack include abdominal pain, fatigue, nausea, upper respiratory tract infections, and increased thirst. The Cleveland Clinic notes that SCLS can be misdiagnosed, potentially leading to delayed treatment. A family friend has set up a GoFundMe for Justin's parents to support their grief and cover funeral expenses. It has raised more than $44,000 as of Thursday.
"Justin was a sweet and loving little boy who brought joy to everyone around him. He loved Pokémon, dinosaurs, and sharks," the fundraiser's description read. "He had a contagious smile, and filled every room with his laughter and endless energy."
Justin's family is hoping to spread the word about Clarkson's so others are aware of the fatal and intense condition. Doctors have yet to determine the cause of systemic capillary leak syndrome. In the days leading up to an attack, patients may experience abdominal pain, fatigue, nausea, upper respiratory tract infections and increased thirst, according to the Cleveland Clinic. Capillary leak syndrome is a serious and potentially fatal condition that causes fluid to leak from blood vessels into tissues, causing blood pressure to rapidly drop and organs to fail Types of capillary leak syndrome Systemic capillary leak syndrome (also called Clarkson's) - cause still unknown, results in repeated episodes that often go untreated Secondary capillary leak syndrome - caused by another condition or medication Symptoms of capillary leak syndrome Abdominal painFatigue Headace Increased thirst Irritability NauseaBody weight increase Viral or upper respiratory tract infection