A 5-Year-Old Boy Complained Of A Stomachache During A Family Vacation — But The Heartbreaking Detail From His Final Five Days Is The Part His Parents Say They Will Never Forget

A heartbroken family is speaking out to raise awareness after their 5-year-old son died on vacation from a condition so rare that fewer than 500 cases have ever been diagnosed worldwide.

Justin Vu died from Clarkson’s disease at Randall Children’s Hospital in Portland, Ore., on Wednesday, July 8, five days after he became unwell, KGW News reported.

He was visiting the Pacific Northwest with his mom, Terese Peden, and his sisters when he told them he had a stomachache on the night of Friday, July 3.

“We figured it was something normal,” Terese told the outlet, but she became more concerned as Justin kept vomiting throughout the night, rushing him to the emergency room the next morning.

Doctors struggled to pinpoint a diagnosis, suggesting potential causes, including appendicitis and a bacterial infection.

In the early hours of Sunday, July 5, as Justin’s condition worsened, doctors told his parents he would need to go on life support and had a “50/50 chance” of survival, Terese told KGW News.

Justin’s father, Viet Vu, flew from the family’s Denver home to join them after his son was admitted to the intensive care unit, he shared on Facebook.

“It took an entire night and morning of researching to find something that sounded similar to what my son was going through,” he said, explaining that doctors eventually came across Clarkson’s disease when attempting to diagnose Justin.

The extremely rare condition, also known as systemic capillary leak syndrome, involves plasma, the liquid part of the blood, leaking out of the capillaries, which are tiny blood vessels, per Cleveland Clinic.

The fluid can leak into parts of the body, including organs and muscles. When it’s not treated quickly, blood pressure drops and leading to organ failure and death.

After identifying the likely cause, doctors tried again to save Justin, but they were unsuccessful, and his parents had to decide how to say goodbye to their son.

“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 added to KGW News, “We read him bedtime stories and played his bedtime music, and he was surrounded by over 30 family members and hospital staff,” explaining that Justin died peacefully.

“I’m really grateful that I got to be his mom,” she said, adding that she would be “honored to be his mom again in another lifetime.”

Calling his son his “best friend,” Viet noted on Facebook that Justin “was healthy, strong, funny, sweet and so much more.”

Friends of the family have set up a GoFundMe fundraiser to cover funeral and memorial expenses, as well as medical bills.

They paid tribute to Justin, calling him a “sweet and loving” boy who “brought joy” to everyone and “loved Pokémon, dinosaurs, and sharks.”

They continued, “He had a contagious smile, and filled every room with his laughter and endless energy… He was deeply loved by his family and friends, and his absence leaves a lasting void in the hearts of all who knew him.”

As Clarkson’s disease is so rare and the cause of it remains unknown, Terese and Viet are hoping to raise awareness of the life-threatening condition.

“We need to get that information out there,” Terese told KGW News. “So that he can save some lives.”

Viet added on Facebook, “If my son’s story can help even one person, it would make all of us happy.”