Five-year-old Justin Vu died on July 8 at Randall Children's Hospital in Portland after a sudden illness during a family vacation. Doctors initially considered appendicitis and bacterial infection before identifying Clarkson's disease, a rare condition in which plasma leaks from capillaries and can cause dangerous drops in blood pressure and organ failure. Despite treatment, Justin's condition worsened and he died peacefully surrounded by family. His parents are now raising awareness and funds to help other families and support research into this rare syndrome.
5-Year-Old Dies From Rare Clarkson Disease Days After Stomachache During Family Vacation
Justin VuCredit: GoFundMe
A grieving family is raising awareness after five-year-old Justin Vu died on Wednesday, July 8, at Randall Children's Hospital in Portland, Oregon, following a rapid and severe illness while on a family vacation in the Pacific Northwest.
Justin VuCredit: GoFundMe
Rapid Onset and Search for a Diagnosis
Justin first complained of a stomachache on the night of Friday, July 3. His mother, Terese Peden, said they initially thought it was a routine stomach bug, but Justin's symptoms worsened when he continued vomiting through the night. The family brought him to an emergency department the next morning.
Randall Children's Hospital in Portland, Ore.Credit: Google Maps
Physicians considered several possibilities, including appendicitis and bacterial infection, but were unable to reach a clear diagnosis quickly. By the early hours of Sunday, July 5, Justin's condition had deteriorated to the point that doctors said he would need life support and that his chances of survival were roughly "50/50," according to Terese.
Justin VuCredit: GoFundMe
Diagnosis: Clarkson's Disease
After extensive review, clinicians identified a condition consistent with Clarkson's disease, also known as systemic capillary leak syndrome. According to the Cleveland Clinic, Clarkson's disease is extremely rare—with fewer than 500 diagnosed cases reported worldwide—and is characterized by plasma leaking from tiny blood vessels (capillaries). This leakage can cause fluid to pool in organs and muscles, trigger dangerous drops in blood pressure, and lead to organ failure if not treated promptly.
Justin VuCredit: GoFundMe
Despite renewed treatment efforts once the diagnosis was suspected, Justin's condition continued to worsen. His parents, Terese Peden and Viet Vu, faced the heartbreaking decision to say goodbye.
"His mom and I decided to have the medical team bring him out to one of the hospital gardens," Viet wrote on Facebook. "He loved to be outside. If we let him stay outside 24/7, he would be out there and play all day."
Terese told KGW News that family members and hospital staff surrounded Justin as they read him bedtime stories and played his favorite music. He died peacefully with more than 30 loved ones and staff present. "I'm really grateful that I got to be his mom," Terese said. "I would be honored to be his mom again in another lifetime."
Aftermath and Raising Awareness
Friends and relatives have set up a GoFundMe to help cover funeral, memorial, and medical expenses. In posts remembering Justin, loved ones described him as a joyful, affectionate child who loved Pokémon, dinosaurs and sharks, and who filled every room with laughter and energy.
Because Clarkson's disease is so uncommon and its cause remains unknown, Terese and Viet are urging greater awareness so future patients might be recognized and treated more quickly. "We need to get that information out there," Terese told KGW News. Viet added on Facebook, "If my son's story can help even one person, it would make all of us happy."
Note: Information on Clarkson's disease and its presentation was referenced from the Cleveland Clinic and local reporting by KGW News and People.
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