It is the BIGGEST FUNDRAISER in the history of Siepomaga❗️Two brothers against DMD❗️

Anger. Despair. Sorrow. We are doing our best to stop these emotions from taking over the fight for our two boys who are suffering from a cruel, terminal disease. When we learned about this, our world fell apart. We still cannot understand how this is possible. But we have to fight despite the fact that the amount seems impossible to get...We are begging for help, please save Kubuś and Adaś. In this situation the whole Poland needs to take actions together...

Adaś, our older son, has always had weaker motor skills than his peers. After many consultations and questions asked to the specialists ,we heard one answer: hypotonia. When he was 2 years old, he learnt to stand up after many exercises with a physiotherapist. It was typical for Duchenne muscular dystrophy. We did not that then...

Our further doubts and worries were dismissed and everything was blamed on hypotonia. However, we did not give up. At last, we went to a neurologist who ordered extensive diagnostics. The results devastated us. All of a sudden, it was dark and cold and we almost drown in our despair...It turned out that our son is suffering from a terminal muscular disease – Duchenne muscular dystrophy.

In this moment, our nightmare has started and it was to become worse soon...You can only imagine how we felt when we learned that our second son is suffering from the same disease. This pain cannot be described with words!

We learned about it when both of them were already born...Kubuś had better motor skills than Adaś in the first months of his life but he started having inexplicable problems with walking. We did genetic tests that confirmed dystrophy for both our sons. Then, for the first time, we felt what it means to be frightened to death.

We have to start a life-and-death struggle...What does it mean? We need to raise MORE THAN 30 MILLION PLN, because this amount will enable us to pay for gene therapy for Adaś and Kuba. To say that we are frightened is to say nothing at all...

Our days are filled with appointments with specialists, regular rehabilitation and check-ups. The boys bravely cope with this new reality and we are trying to hide the extent of our fear from them. We are aware that our current actions may slow down the progress of the disease but will definitely not stop it. 

Adaś is 5 years old at the moment and has problems with coordination and balance. He is not able jump. Kubuś is 3 years old and tires quickly, walks slowly, barely keeping balance. 

Fortunately there is a medicine that may realistically prevent the disease from progressing and allow our boys to live normally... Unfortunately, its price is devastating. It would have been difficult to raise 16 million PLN for one of our boys but we have to gather the funds for both of them. We are a standard family and we are not able to raise so much money on our own...

Duchenne muscular dystrophy is a disease that attacked our sons and has a very cruel scenario for them... First, the leg muscles are attacked. Children struck with this disease stop walking between 8 and 12 year of age. Then, hand muscles and paraspinal muscles are attacked which leads to a complete loss of self-reliance. At last, people suffering from this disease became entirely dependent on their relatives. Breathing is supported by special equipment and death comes in the second decade of life. 

When we are thinking about it, our eyes fill with tears. We cannot allow for this to happen. We will do anything to save our children...

We do not even know how to ask. It is frightening that the lives of Kuba and Adam depend on the strangers. But we have to unite. Dear people, although we do not know you personally, we have to beg for your help. We truly believe that we can reach many good-hearted people who will not be indifferent. Do not allow for a double tragedy to happen... We put all our hopes in you...

Adaś, Kubuś – we will do e v e r y t h i n g to save you. We love you so much. 

Mum and Dad