BROTHERLY LOVE STRONGER THAN ANYTHING: Little Jakov (8) walked from Kragujevac to Belgrade and collected 24,000 euros for his sister’s treatment! (PHOTO)

Serbia has been buzzing for days about the precious feat of eight-year-old Jakov Stojanović from Kragujevac, who, during last week, walked for five days from his hometown all the way to Belgrade, in order to collect at least part of the money for the treatment of his sister Janja, who is a year younger. With the help of his parents, but also the good people who followed him, he managed to collect as much as 24,000 euros during five days of walking, and another 26,000 is still needed for the third dose of the medicine, necessary for the girl with Joubert syndrome, who is the only one in Europe with these deadly genetic mutations. For the health authorities, one might say, it is a paltry sum of 50,000 euros. However, as the parents of these brave and persistent children say, the state has not paid a single dinar so far because the disease, imagine, does not have a code.

Seven-year-old girl Janja is fighting to overcome the difficult diagnosis that her small body is carrying. However, without the experimental medicine, which she receives in Germany, her struggle has weaker chances of victory from day to day.

Her older brother Jakov joined the fight protectively, walking for five days last week from Kragujevac to Belgrade to inform the public about his sister’s need for treatment and to collect the money she desperately needs for it.

“Jakov handled all of it great; one day he had sunstroke, but mostly he was fine and will go to school tomorrow. He is happy that he managed to walk to Belgrade and that he helped his sister. He did everything he could and more than that, but he does not understand the details of her illness, nor should he, he is still small. By walking to Belgrade, they collected a total of 24,000 euros for Janja, which is a large sum,” Tamara Stojanović, the mother of these two small yet great heroes, tells Nova.rs.

Another 26,000 euros is needed for the third dose of the medicine, which is life-saving for Janja.

Is this sum too large for the state, or is it some other “justified” obstacle?

“Besides being sick, the problem is that the diagnosis Janja has does not have a code in Serbia. And that is the explanation for everything! She doesn’t have a disease code, so the state can’t do anything for her. We barely get caregiver allowance and assistance, so we don’t expect the state to pay anything; it’s against their protocols, so it’s obviously too complicated. From the state, she only received a genetic test, which we repeated in Italy where the gene of concern was confirmed. That is all we received from health insurance, i.e., from the state,” Tamara explains.

Little Janja’s parents inquired themselves about how to help their child.

“We researched and through doctors reached the information that she can receive experimental therapy in Berlin. She has already received two doses there, but it is necessary to receive this third one as well, so that the medicine can help completely. After the first dose, she progressed a lot, but after the second, her condition worsened. Now she has to receive the third dose to complete the therapy, but they will do an examination before that. All of that costs money. We also pay extra for the trip there and accommodation, and all four of us go. I avoid having her stay in the hospital when she receives the medicine because 600 euros is the price of one hospital day, which is more expensive than private accommodation,” says mom Tamara.

No “code,” no money

Due to the non-existent “disease code,” Janja’s parents had to pay for kindergarten, as well as almost all medical aids.

“I should have registered my child as having cerebral palsy in order to receive something, and she doesn’t have 그 diagnosis, but our system recognizes that disease, while hers is non-existent. As a child with disabilities, we had to pay for her kindergarten because the diagnosis has no code. We recently bought her a communicator through a foundation which otherwise costs 914,000 dinars. For a communicator through the state, she was on a waiting list, and we were told she would wait six months to six years, which is truly not normal, so we decided to buy it another way. Otherwise, we get almost all aids from donations, through the foundation, and everything is overpriced, so just a car seat for her costs 4,000 euros,” Janja and Jakov’s mother emphasizes.

After the walk, during which they collected half of the sum needed for the medicine, Janja’s parents hope to collect the rest of the money through donations within the next month at the latest.

“As soon as we collect the full amount, we are packing up and leaving!” says mom Tamara.

As a reminder, the girl Janja Stojanović from Kragujevac is the only person in Europe with a change in the gene that mostly results in a fatal outcome. In addition to Joubert syndrome, Janja also has polydactyly (six fingers) and ptosis of the right eyelid, which she had surgery on when she was only three months old.