5-Year-Old Boy Dies of Extremely Rare Condition Days After Complaining of Stomachache During Vacation

A family from Denver is urging greater awareness of Clarkson’s disease following the tragic death of their five-year-old son, Justin Vu. He passed away on Wednesday, July 8, at Randall Children’s Hospital in Portland, Oregon, just days after being diagnosed with the extremely rare condition.

Justin was on holiday with his mother, Terese Peden, and his sisters when he fell ill. The ordeal began on the evening of July 3 when Justin complained of a stomach ache. Initially, Terese assumed it was merely a typical ailment. However, her concerns grew as his condition worsened, leading to persistent vomiting throughout the night. The following morning, she made the decision to take him to the emergency room.

Upon arrival, Justin’s symptoms puzzled the medical team. Doctors considered a number of potential diagnoses, including appendicitis and a bacterial infection. However, as his health deteriorated in the early hours of July 5, medical professionals informed Terese and her partner, Viet Vu, that Justin would require life support and had only a “50/50 chance” of survival.

In a desperate attempt to understand their son’s plight, Viet flew from their home in Denver to be by Justin’s side. The father shared on social media about the length of the search for a diagnosis, revealing that it took substantial research during the night until doctors finally identified the cause as Clarkson’s disease.

Clarkson’s disease, more formally known as systemic capillary leak syndrome, is characterised by plasma leaking from small blood vessels, or capillaries, into surrounding tissues. This leakage can lead to severe drops in blood pressure, organ failure, and, in fatal cases, death. It is so rare that there have been fewer than 500 cases documented throughout medical history.

After identifying the condition, medical staff made fervent attempts to save Justin’s life. Tragically, these efforts were unsuccessful, and the heartbroken couple was faced with the agonising decision of how to bid farewell to their son. They chose to spend his final moments in the hospital garden, a place where Justin loved to play, surrounded by family.

“We read him bedtime stories and played his bedtime music,” Terese recounted in an interview. She expressed gratitude for the time they had together, saying, “I’m really grateful that I got to be his mum. I would be honoured to be his mum again in another lifetime.” Viet, who referred to his son as his “best friend,” described Justin as “healthy, strong, funny, sweet and so much more.”

In light of their loss, friends of the family have started a GoFundMe campaign to help with funeral costs and medical expenses. The tribute to Justin described him as a “sweet and loving boy” who loved Pokémon, dinosaurs, and sharks. They noted that his contagious smile and bright energy had a profound impact on those around him.

The family’s heartache has also sparked a mission to raise awareness about Clarkson’s disease. Terese stressed the importance of disseminating information about the condition, stating, “We need to get that information out there. So that he can save some lives.” Viet echoed her sentiments, expressing hope that Justin’s story could potentially help someone else.

As they navigate their grief, the Vu family is determined that their son’s legacy will contribute to greater understanding and awareness of this mysterious and dangerous illness. Their powerful message serves as a reminder of the fragility of life and the urgent need for medical advancement in the understanding of rare diseases.