Mikolaj is in danger! The fight for his life and the most expensive medicine in the world continues!

Already in the first weeks of pregnancy, when I was carrying Mikołaj under my heart, the doctors did not give him any chances ... When my son was born, I had great hope.  that he is already safe and that he is no longer in danger.  20 days after giving birth, I received a call from a doctor with cruel information - Mikołaj has SMA.  In one moment my heart broke into a million pieces.

The story of Mikołaj is not the simplest one.  From the very beginning, he was doomed to a hard fight for his life.  When I was diagnosed with an umbilical hernia after the first prenatal screening, my world collapsed.  Another blow was the information about the risk of genetic diseases.  I was anxiously waiting for the next tests that ruled out any threats.

On January 26, 2022, my son Mikołaj was born naturally. That day was not the happiest day of my life.  Tears of emotion replaced tears of sadness and fear.  Doctors concluded that the umbilical hernia in which the intestine is located has not been absorbed.  A decision was made to transport him to the clinic in Zabrze and perform the procedure.

I was left alone in the hospital.  I heard other children crying. Mikolaj wasn't there.  I felt mentally exhausted.  I wanted to hug him as soon as possible.  Together with the information about the successful operation, it came about another detected abnormality - in the kidney and rotarvirus infection.  The hope of returning home drifted away from us more and more.
 On Sunday, February 6, the phone rang.  I heard that screening for SMA showed Mikolaj is at risk.  Once again I faced fear.  I did not know what to do.  I begged for repeated tests to rule out a cruel disease.  In fact, this is where the worst part of our family drama begins ...

Sunday, February 13, was the day when I could finally return home with Mikołaj, where my older sister was waiting for him.  I really believed we were safe now.  However, happiness did not last very long.  2 days later the phone rang confirming this terrible news ...
 Spinal muscular atrophy is a cruel and deadly disease.  Every day he asks himself one question - "Why Mikolaj?"  When he was a few weeks old, he suffered more than many adults ... And when it was going to be all right, our greatest enemy came - SMA.  I can't find words to describe how afraid I am ...

At this point, the best possible salvation for Mikolaj is drug therapy which it was only available in the United States recently and now also possible in Poland.  Unfortunately it is the most expensive medicine in the world - the cost of therapy is over 9 million!

I will do anything to save my child.  I will knock on every door to find a way to save Mikołaj ... Now I know that I will not be able to do it alone with my husband.  That is why I am not asking - I am begging you for help!  You have proven many times that you can work miracles by joining forces!  Help us and let it not be too late ...

Parents