Article No. 304
12 December 2019
The alliance received a copy of an aHUS story from Slovakia.
There are are unlikely to be more than two people to onset with aHUS( atypický hemolyticko-uremický syndróm) in Slovakia each year.
In 2018 a small child called Samko was unfortunate to be one of those two.
Here is his story translated from the original published in Slovakia
A tale of resilience by Samko and his parents in difficult and extraordinary circumstances.
Samko learns everything for a second time
Two-year-old Samko was a wholly healthy baby until he was 14 months old. Every day, his parents enjoyed his progress. At one point, however, the whole family’s life turned upside down.
Six weeks in artificial sleep
Finally, he spent an incredible six weeks in artificial sleep at the Children’s University Hospital in Bratislava. His condition was critical, and gradually his lungs, kidneys, liver, stomach and intestines failed. “We were incredibly worried about him. The sight of the defenseless Sam connected to all sorts of instruments tore our hearts out. We have told each other that hope is dying, ” Simona recalls the events a year ago. By the time she was fighting for her son’s life, she was already carrying her other child under her heart. “It probably helped us stay strong and positive,” she adds in one breath.
The little warrior eventually got the worst and then his condition began to improve day by day. They even decided to take him out of artificial sleep. “I wanted to be at Sam’s first hours after waking, even though they didn’t recommend me in the second state. I just had to be with him, and even though he didn’t notice me, I held his hand all the time. Every mother would do that, ” says Simona.
Finally, the doctors found a very rare disease with the complicated name aHUS (atypical hemolytic-uremic syndrome). The danger is that the patient gradually suffers damage to vital organs. They immediately began treatment and rehabilitation.
Everything survives for the second time
The parents could finally take their son home from the hospital after three months. “He was a year and a half, but he was literally like a newborn. He slowly began to perceive us, focused for a moment and followed us. He had to learn everything again, both sitting and walking, ” says Simona. The parents were added a number of responsibilities upon their arrival from the hospital. They have to help Sam exercise at home every day, attend rehabilitation, massage and examination. They travel every other week from Orava to Bratislava because they have to use special infusions without which their health would deteriorate sharply.
Little warrior is making progress
For the advancement of Samko, rehabilitation in specialized facilities is the most helpful. “It was there that he made the most progress. But, unfortunately, this stay is not covered by health insurance companies, ” says Ms. Simona, who received a three-week rehabilitation stay in Piešťany with her son thanks to a grant from the Fighters for Health grant program.
Thanks to the intensive care of the on-site experts, Samko has improved his standing position and is learning to walk for the second time in almost two and a half years. “His standing stability has improved. He can stand for a few seconds and uses more his beautiful legs, ”says a proud mom who makes every effort to ensure that her son leads a full life.
NOTE: The original article can be seen using the link below.
The swift and sudden onset of a catastrophic episode of aHUS is known to many, that “car crash” and an eventual diagnosis.
The ongoing effects of the TMA and its treatment have a varying impact on recovery, care and valuable parental and social support , in Samko’s case when his new sibling arrives too.
Samco was well , suddenly became ill, was saved and is on a long road back to recovery, but with 12 days to this Christmas things will be better than last year.
But Samko’s story is just one of others out there.