The six -month -old Alex’s medicine costs 1.3 billion

1.3 billion forints – an amazing amount, many may not suddenly tell you how many zeros are after the numbers if you have to write it down. They have to raise so much money for the six -month -old Alex’s parents to make a their little boy get a chance for life And the medicine that can save him.

« It all started with a protracted jaundice, » recalled the little boy’s mother, Simon Barbara. – After giving birth, they were let go from the hospital without any problems, but Alex was yellow even after the second month.

Parents took the baby for investigation where The doctors noticedthat the liver values ​​are not right. Of course, it didn’t go over a moment to another, and it turned out what was wrong with the little boy, it was four months old. From here it didn’t take long to make a diagnosis: Alex Duchenne suffers from muscle dystrophy. The mysterious name is behind a cruel illness: the children who are suffering from this disease are slowly losing their muscles, the location of muscle cells is filled with adipose tissue and connective tissue, so that patients are slowly paralyzed.

« They usually find out about the age of 3 when they start walking, » Barbara said. – If you can say so, we are lucky in this regard, as the disease has been revealed very early.

When the diagnosis was communicated to the parents, they didn’t really realize it. They didn’t dare to believe that they asked for a second opinion to see if the doctors were wrong. Then, when the second investigation confirmed this, there was a feeling of depletion.

– Fortunately, we are starting to find out how to solve problems after the first shock. Thus, we found out that there is already a medical treatment that patients can receive either in the United States or in Dubai.

The price of treatment is incomprehensible to an average person: 1.3 billion forints, which is only the price of the medicine, travel and staying outside.

« It doesn’t even heal the patients, but so to speak, turns the disease into a milder illness, » the mother said. -People with Duchenne syndrome are typically wheelchairs from the age of 8, and from now on their condition is only deteriorated: the drug can prevent and avoid it.

Family supporters began collecting the little boy’s medical treatment, but only a fraction of the awesome amount, 128 thousand HUF, came together.