When we were trying to have our first baby we were excited and hopeful. The pregnancy proceeded correctly. 26th February was one of the best day in our life. It was the day Kacper was born. He has  a perfect Apgar score of 10. We came home as a happy family with a healthy child. His physical and cognitive development for the first year was correct. One day we noticed that our son is developing more slowly that other children. He could not walk himself, stopped gaining weight and started to vomit frequently. We were trying to keep things in perspective. We started the rehabilitation which initially was effective. Then, unfortunately we had to stop the exercises which aimed to speed up Kacper’s development, because he had chicken pox. Due to developing mentioned unusual symptoms, we started to took him to doctors. Several doctor’s appointments. Many hours spend on seeking any help and always the same diagnosis: the child is healthy. This insidious disease manifested itself in atypical symptoms. Finally has become a serious challenge for doctors. Kacper’s health deteriorated greatly by the day. He was exhausted. He had been taken by ambulance to hospital, where after few days of medical examination, he was diagnosed with Leigh syndrome. It is incurable, metabolic and very rarely degenerative disease which has a genetic component. It is causing havoc on his little body. Every day is full of constant fear, misery, sadness and sleepless nights with pillows wet with tears. 

Our son, despite his young age, has gone through a lot. Nevertheless, everyday on his face appears a smile, what give us strength to fight. We will do everything in our power to help him function like million other children and to enjoy the life. We know that we cannot give up and we have to do whatever it takes to help Kacper.  After a long research of any information connected with this disease and treatment, we managed to meet many beautiful people, who led us to curesurf1 website. It gave us a motivation. We think about a gene therapy everyday. Kacper and thousands of other children put all their hopes in the gene therapy. We pray and firmly believe that God will help doctors and this therapy will become effective. 
‘Hope dies last’

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Our mission is to fund SURF1 gene therapy research at UT Southwestern Medical Center in Dallas, Texas.  The field of gene therapy has gone through remarkable breakthroughs these last few years and offers incredible promise for genetic diseases such as SURF1 Leigh syndrome.

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