Justin Vu, 5, of Denver, died on July 8 after complaining of stomach pain on July 3 during a family vacation to Oregon.
The family had traveled to the Pacific Northwest to visit family, spending four days at destinations including Cannon Beach and the Oregon Zoo.
When Justin complained of a stomach ache on the night of July 3, mother Terese Peden said, “He just said he had a stomach ache, and we just figured it was something normal.”
But Justin spent the night vomiting, prompting his parents to take him to the emergency room the following morning.
Doctors worked to determine the cause of his illness, considering possibilities ranging from appendicitis to a bacterial infection.
His condition rapidly deteriorated over the following days.
As Justin’s condition rapidly deteriorated by early July 5, his parents received devastating news: “They told us he had to be put on life support, and that he had a 50-50 chance,” Peden said.
While Justin underwent additional testing at Randall Children’s Hospital, one physician suspected a rare diagnosis, and Peden recalled: “She said this sounds a lot like Clarkson’s.”
Clarkson’s disease, also known as systemic capillary leak syndrome, is an extremely rare condition, with only about 500 cases reported worldwide since it was first identified in the 1960s, and it causes fluid and proteins to suddenly leak from blood vessels into surrounding tissues, leading to dangerously low blood pressure, severe swelling and potentially life-threatening organ failure.
Once doctors identified the likely diagnosis, Justin’s medical team made a final effort to save him, but it was too late, and Peden said: “We were informed that his body was dying, and those medications were not going to be enough.”
His parents made the difficult decision to say goodbye.
Peden said: “We read him bedtime stories, and played his bedtime music, and he was surrounded by 30 family members and hospital staff.”
They said Justin died peacefully.
Justin was only 5 years old and about to start kindergarten, and Peden and Vu told KDVR that he loved Pokémon, dinosaurs and sharks.
They added that Justin would sneak toys into bed when he was supposed to be asleep because he loved to play all the time.
Father Viet Vu, a radiologic technologist, described his son in an ABC News interview: “Justin was a happy and healthy little boy. He was playing T-ball. He ran around and played outside all the time.
And out of nowhere, he’s gone now. And it just doesn’t really make any sense,” Vu told ABC News.
Vu described his son as “super sweet,” someone who loved to meet new people and make them laugh.
When speaking to ABC News about his son’s death, Vu said: “We don’t know why or how Justin got sick. I don’t understand why he was taken from us because he didn’t deserve any of that.”
He added: “He was a good boy and he was loved … none of this makes sense because he was only 5 years old. He didn’t have a chance to grow up and grow into the person that I know he could be.”
Peden reflected on the family’s fight: “We’re trying to figure out what life looks like now and taking it day by day. We kind of had a mentality that we weren’t leaving there without him and so we really just fought. Us and our whole family were Team Justin, and we held out hope until that next morning when they told us there was nothing they could really do.”
Now the parents are raising awareness about the disease.
Justin’s father Viet Vu posted on Facebook: “If my son’s story can help even one person, it would make all of us happy.”
Vu told ABC News: “Parents need to know about this invisible disease that has no real signs. I’ve never even heard of it, and I’m 39 years old — and it kind of just hit us.”
His mother added: “Nobody at Randall’s had ever seen anything like it, so we need to get that information out there so that he can save some lives,” Peden said.
Peden also shared a final message for her son: “I would be honored to be his mom again in another lifetime, and that I’m really grateful to get to be his mom,” she said.
The family is currently planning a funeral for their son.