Unfortunately, the association LIFE was born out of necessity. Everywhere in the world, it is a big problem to get a diagnosis when it comes to rare diseases, which means that here it is even more difficult. Those who are there to help us heal our children, in fact often do the opposite.

Luka’s story

After the establishment of the Association, the first thing on the agenda was addressing the media. This was followed by articles in Blic, Dnevnik, Kurir, an appearance on the National Diary on Pink TV, distribution of flyers and posters.

Mr. Jovan Jurica from Pancevo contacted us shortly. His granddaughter Zvezdana was seriously ill and did not have a diagnosis. Reading an article in the newspaper, he recognized the symptoms and contacted us immediately. Already tomorrow, the Jurica family arrived in Novi Sad. Lance W. Johnson met us again and at our request did an enzyme test for little Zvezdana. Unfortunately, our fears were confirmed. Zvezdana has the same form of Batten disease as Zoya and Aleksa.

Not long after, the Đurić family from Belgrade contacted us. To our astonishment, they had already had a diagnosis for their son Luka for years. And the doctor who led them told Bojana Mirosavljević just a year ago that there is NO child suffering from this disease in Serbia. So not only do they not provide us with adequate help, but they also lie to us and hide information.

Unfortunately, despite these initial successes, we have not achieved the impact we expected in terms of donations.

Then came the twist. On June 10, Kurir and Blic published an article about our children and our bloody struggle with the state. This was followed by an invitation from Darko Miličić, a basketball player in the NBA. He promised to pay for treatment in China for all four children. This was incredible news. Not only did we get the hope that we would really save our children in one move, but the whole of Serbia was buzzing about him for days. Until a few days ago, no one, not even doctors, had any idea about it, and now celebrities such as Bajaga, Suzana Mančić and Vuk Kostić are talking about Baten’s disease.

What is very important, on 28.07. our representatives are traveling to Chicago (USA) for an international conference on Batten disease. This will be a real opportunity to strengthen ties with other parents who have children suffering from this disease, but the most important thing is that we will meet doctors and experts and find out firsthand what the chances are that a cure will soon be found!

Another big thing is that the Đurić and Jurica families traveled to China for stem cell treatment. We, the Čović family, will join them in August and regularly follow the events at Tiantan Puhua Hospital and the children’s progress on our blog. We will post pictures, videos and our observations during the treatment. Not long after we return, the Mirosavljević family will also go to Beijing. Therefore, four children suffering from the late infantile form of Batten’s disease will receive stem cell treatment in a very short period of time, and we believe that, if the treatment is successful, it will help many parents to decide on this step.

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On our second trip to China, which took place in the spring of 2011, little Strahinja went with us. He was being treated at the children’s hospital in Novi Sad at the time of the arrival of experts from America. On that occasion, a blood sample was taken and after a few weeks the diagnosis was confirmed. You can read Strahinja’s story HERE

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Our struggle bore fruit even outside the territory of Serbia. We also came into contact with the family of seven-year-old Antun from Zagreb, who unfortunately is not the first child in his family to fall ill. Click HERE to read the shocking story of the Glasnović family.

For more recent developments, see the section BLOG