Five-year-old Justinas Pedenas died in the hospital shortly after he began complaining of abdominal pain and was diagnosed with the rare Clarkson disease, reports dailymail.com
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“We still find it hard to believe that everything happened in just five days,” the boy’s mother Terese Peden tearfully told the media channel KVUE.
Fateful vacation
Terese and Justinas’s father Viet Vu were traveling with their son around the Pacific Northwest region of the USA when on July 3 the five-year-old began complaining of abdominal pain.
“He just said his tummy hurt. We thought it was something normal,” the mother recounted.
However, after a night full of vomiting, the parents rushed their son to the emergency room. Doctors were initially puzzled – the child’s condition could indicate dozens of different diagnoses. On July 5, as the boy’s condition deteriorated relentlessly, the doctors delivered shocking news to the parents.
“We were told he had to be connected to life-support machines, and his chances of survival were fifty-fifty,” recalled T. Peden.
Rare and insidious syndrome
After further tests, a doctor at Randall Children’s Hospital hypothesized that the boy might have Clarkson disease, also known as systemic capillary leak syndrome.
This is an extremely rare condition – since the 1970s, only about 500 cases of this disease have been recorded worldwide. During it, fluids and proteins leak from blood vessels into surrounding tissues. The syndrome causes dangerously low blood pressure, severe body swelling, and life-threatening organ failure.
The terrible diagnosis for little Justinas was made too late.
“We were told his body was dying and the medications no longer worked,” said the boy’s mother. In this heartbreaking situation, the parents had to make a nightmarish decision – to say goodbye to their child.
Last moments in the hospital garden
The boy’s father Viet Vu shared on social media that his son “fought with all his might until July 8.”
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“By then his organs had already refused to work. The doctors said there was almost no chance of recovery or survival. At that time, my boy was already unrecognizable. His face and body were so swollen from the fluids that were keeping him alive. To protect him from catastrophic suffering, the doctors advised letting him go peacefully,” wrote the devastated father.
V. Vu said they asked the medical staff to move Justinas’s bed to the hospital garden because the boy loved being outdoors. There, reading bedtime stories and playing his favorite music, the parents and older sister said goodbye to Justinas.
“After reading the stories, we played his sleep playlist. The older sister, mother, and I rested our heads on his bed and held his little hands one last time before turning off the life-support machines,” the father shared.
“It’s the hardest thing I’ve ever had to do. Even harder because we have no clear answers as to why this happened. He was a happy, healthy boy with no health problems. So you want to blame someone, even though I know no one is to blame. I am tormented by huge regret that I took my son for granted because I thought we had so much time left,” the father said.
The deceased boy’s mother added: “No one at Randall Hospital had ever seen anything like this, so we must spread this information so that his story might save other children’s lives. It would be a great honor to be his mother again in another life. I am infinitely grateful for the time I could be his mom.”
Support for the family and scientific research
A GoFundMe page was created to help the family cover funeral expenses and raise funds for Clarkson disease research. On the page, the five-year-old is described as “a good and loving boy who brought joy to everyone around him.”
“He had an infectious smile, and his laughter and boundless energy filled every room,” the support page states. “Justinas’s illness progressed at a heartbreaking speed. In a few days, the family went from seeking answers to saying goodbye to their most precious child.”
The boy’s aunt Emily Peden remembers Justinas as a smart, beautiful, and friendly boy who had just finished preschool.
“He loved spending time with family, making funny faces in photos, and playing pranks. He was the coolest, smartest, and funniest guy. He loved Pokémon and Mario games, adored animals – especially sharks, dinosaurs, and ducks. Justinas was a special boy. Too good for this earth and so unique that no one in the world had ever seen anything like him.”
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