Justinas traveled with his mother Terese Peden, brothers, and sisters during the summer holidays. The boy’s father Vietas Vu said that until then his son was healthy and active: he played baseball, spent a lot of time outdoors, liked to socialize and make people laugh, reports “ABC News”.
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The father decided to publicly share Justinas’s story so that other parents would learn about this rare disease. According to him, it is like an invisible disease, which at the beginning does not show any clear, only characteristic signs.
Initially suspected infection
According to the father, Justinas felt well during the first three days of the trip. On the fourth evening, the boy began to complain of stomach pain, and that same night he started vomiting. The next day, his mother took him to the local hospital’s emergency department.
At first, doctors thought the child might have appendicitis or an infection. Later he was transferred to a children’s hospital in Portland.
Inflammation and fluid accumulation were found in Justinas’s body, so doctors first tried to treat a possible infection. According to the father, the boy was prescribed four different antimicrobial drugs intended to treat possible bacterial and rarer infections.
When the child’s condition became critical, the father came from Denver to Oregon. However, Justinas was already being treated in the intensive care unit at that time.
The father said he no longer had the chance to hear his son’s voice or talk to him again. Just five days after being admitted to the hospital, the boy died surrounded by loved ones.
Diagnosed with a very rare disease
Eventually, doctors diagnosed Justinas with systemic capillary leak syndrome. This condition is also called Clarkson’s disease or Clarkson’s syndrome.
It is a very rare, severe, and episodic disease, most often diagnosed in previously healthy middle-aged people. It is diagnosed in children especially rarely. According to the National Organization for Rare Disorders, fewer than 500 cases of this disease have been registered worldwide since the 1970s.
When affected, fluid begins to leak from small blood vessels – capillaries – into surrounding tissues. This can quickly and severely lower blood pressure, disrupt organ blood supply, and pose a life-threatening risk.
Symptoms can resemble a common infection
The first signs of the disease can be short-lived and nonspecific. A person may have a stuffy nose, develop a cough, nausea, dizziness, abdominal or head pain, swelling of the hands and feet.
White blood cell count may also increase, so initially it may seem that the condition was worsened by an infection or another illness. Without treatment, symptoms rarely resolve on their own.
Scientists have not yet been able to determine exactly what causes this syndrome. Available data do not show a clear hereditary predisposition. It is believed that various inflammatory processes may influence capillary permeability during disease episodes.
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Justinas’s father said he still does not know why and how his son became ill.
