One in a million. Mariusz is fighting hemophagocytic syndrome❗.

Back to everyday life

Mariuszek has happily returned to kindergarten, starting a new stage in kindergarten. He is enjoying every day spent with his peers and the possibility of at least a partial return to normalcy. Although it involves stress for the parents because of the risk of infection, their son's joy gives them the strength to face everyday life.

Second year of remission

At the end of June, the boy began his second year of remission. Health is good, but any infection remains a major threat. Follow-up blood tests are still needed every two weeks, and visits to "Cape of Hope" every three months for tests such as EBV levels, PCR and lymph node ultrasound.

Additional difficulties

In August, Mariuszek was also admitted to the pediatric nephrology department. Tests revealed the presence of three deposits in his kidneys, which have persisted since June and require constant monitoring. Every six months, stays of several days at the nephrology clinic will be necessary for tests.

Moments of anxiety and hope

In early September, a fever appeared, which caused a lot of anxiety, but fortunately, after two days it subsided and turned out to be only a minor infection. The latest check-up at the Cape of Hope confirmed stable results. The problem of low iron levels and mild anemia has persisted since last October. The boy needs to take ferritin maintenance medication to keep his iron levels safe. September 26, 2025

Disturbing changes in the results. Ahead of Mariuszek further tests

On a day-to-day basis, Mariuszek is enjoying his childhood as much as his ongoing treatment allows. Until recently, during a follow-up visit to the Cape of Hope, there was no indication that the boy's health was deteriorating. However, the results of the check-up, which took place in early June, showed inflammation in the boy's body, the cause of which is still unclear. Liver function deteriorated, the number of red blood cells decreased, and despite the iron he had been taking for months, his iron levels dropped even further. In addition, an ultrasound revealed three deposits that require expanded diagnostics. Already a date has been set for further tests at the University Clinical Hospital in Wroclaw in the nephrology department June 16, 2025 Mariuszek recently went through the flu, which emaciated him badly - he lost as much as 3 kilograms. Before he could recover, he was attacked by rotavirus. It was a very difficult time for him, full of fatigue and pain, but our little hero continues to fight with incredible courage and strength. Today, despite all these difficulties, Mariuszek is in remission. His smile, although sometimes hidden behind fatigue, gives us the strength to go on. Every visit to Cape of Hope is a challenge for him, but also a hope for a better tomorrow. May 15, 2025 After a long period of waiting, we have great news - Mariusz's adrenal glands have taken up work, allowing him to wean off hormonal steroids. He recently struggled with an infection that caused a rather high fever, but fortunately it turned out to be harmless and quickly subsided. Mariuszek is currently doing well, although he is still battling complications from the treatment. He recently spent several days at the University Clinical Hospital in Wroclaw in the nephrology department, where he underwent tests related to kidney and ureteral stones. The results showed that his kidneys were taking up calcium, salt and potassium from the gastrointestinal tract, leading to absorptive hypercalciuria. Parents must now keep an eye on the daily supply of calcium and salt to prevent the risk of deposits in the kidneys and ureter. Marius must have a follow-up ultrasound once a month to monitor the situation, and show up for follow-up appointments at Cape Hope every four weeks. Unfortunately, tests in October showed a drop in ferritin and red blood cell levels, so iron administration became necessary. In addition, Mariusz's liver is still not in the best shape, requiring specialized medication. Despite these challenges, Mariuszek is not losing hope and believes that his health will soon improve and the family will be able to return to normalcy. December 6, 2024

Marius fights side effects of treatment❗

Mariuszek is still bravely facing a very rare disease. Currently, the boy usually feels well, although the test results do not always show it. The positive results of treatment have allowed our charge to return home, and he now has to appear for regular check-ups at "Cape of Hope" every four weeks, and once a week a community nurse visits Mariuszek at home and takes a sample from him for testing. Our Warrior continues to struggle with immunosuppression, or immune deficiency. Because of this fact, Mariusz and his parents have to be very careful about contact with other people. The boy can't even play in an empty playground because of the huge amount of bacteria, which pose a great danger to him. The boy's adrenal glands are not working properly, which means he must continue to take a high dose of steroid hormones, as well as medication to regenerate his damaged liver. A hospital stay in the nephrology department is also planned, as doctors do not know why calcifications are appearing in Mariusz's body. Mariusz is not giving up and is bravely taking the next steps forward. Despite the gigantic difficulties and side effects of treatment, he remains full of faith in the final success. He recently said goodbye to his beloved grandmother, to whom he was deeply attached. Now he would like to continue his journey so that his grandmother can continue to be proud of him as she has been so far. We encourage you with all our strength to continue supporting our Warrior! Although the disease has been put into remission, the boy's body still needs a lot of support to fully recover. September 25, 2024 HLH was found to be in remission, but this is not the end of Mariuszek's fight❗. Mariuszek and his mother left the "Cape of Hope" clinic in Wroclaw at the end of June. The Warrior left the hospital in good, though not perfect, condition, with immunosuppression. During his stay at home, everything seemed to indicate that the results of follow-up tests would be just fine. However, a follow-up visit to the "Cape" showed that Mariusz's adrenal glands were not functioning properly, and it became necessary to increase the doses of medication the boy was taking. Despite the successful flushing of twelve stones from the kidneys and ureter, kidney test results are still worrisome, calcifications are appearing, and doctors are wondering why this is happening. To this end, the boy's parents will go with him for detailed diagnostics at the nephrology department of the University Clinical Hospital. The brave toddler's liver is fatty, although no one knows for what reason. In addition, the doctor recommended a low-sodium and normocalcium diet. There is also good news - HLH was found to be in remission, but it is still necessary to test EBV levels and protect the boy from any germs. Life outside the hospital is proving challenging. Blood tests are required every 14 days, and if Warrior's mom notices anything worrisome, she has to call the doctor immediately. The parents of the brave boy are asking for support! Due to the illness of their beloved and longed-for child, they had to move out of their current place of residence and arrange their lives completely anew. July 16, 2024