Almost three years ago, the people of Vranje organized charity auctions and bazaars, appealing and begging all good people to help a baby suffering from spinal muscular atrophy (SMA) get a chance to live, so that young parents Miloš and Ivana could peacefully hug their child whose hope for the future cost a fabulous amount.
A wave swept through our country and our compatriots abroad. Athletes, artists, politicians, businessmen, and others helped, so that Vukan Stojiljković from Vranje received “zolgensma”, the most expensive medicine in the world, which costs around $2.5 million, two and a half years ago in Hungary.
Recently, the Stojiljkovićs returned to their hometown of Vranje, where they will celebrate the New Year together for the first time, outside of the hospital. In carefully chosen words, mother Ivana tells “Novosti” what they all went through to be able to say without fear today: “Vukan is now well.”
“Many known and unknown people gave him a chance to live. That’s why we celebrate the day Vukan received the medicine as his new birthday. It was very difficult to face such a life challenge. We were happy about his birth, and just a few months later, we heard the very difficult words of the doctor that he was suffering from a rare disease that was incurable until a few years ago, until medicine reversed its course,” says Ivana, never taking her eyes off the cheerful Vukan who is curiously discovering the world every day, now new to him…
Vukan received the medicine when the symptoms had already developed because it was not possible to diagnose this disease immediately after birth. Ivana and Miloš say that the state recognized their open fight, the appeals of doctors, other parents who faced the same problem, and associations for rare diseases, and neonatal screening for SMA was introduced for every future newborn. Thus, she says, she gave future children a chance to develop as if that disease was not in their organism.
“We were as happy about that news as when the money for Vukan was raised. No parent should have to face the fact that their child’s life depends on money,” Miloš and Ivana say almost in unison.
They say that Vukan is getting better, he is not completely cured because the disease has already damaged the neurons that cannot be restored, but he is getting stronger every day.
“He sits on his own, plays, started talking, all of that would have been impossible without medicine, and he probably wouldn’t be with us now. A few months ago, we finally got the opportunity to return to our hometown of Vranje, to our home. We were excited. Vukan also liked coming back to be with his loved ones, with his family, friends,” says Ivana.
The Stojiljkovićs say that when the worst was over, when they won the battle for their child, nothing was difficult for them anymore, but that it was not easy to cope with the daily challenges because a lot of work has to be done with Vukan for him to progress.
“For everything that healthy children naturally achieve in development, Vukan has to fight hard. He is a fighter, and he gives us strength when we falter to keep fighting. We don’t know what the future holds or what his maximum limits are, even medicine doesn’t know because the therapies are new and it’s been a short time since the first children received them, but we hope for the best,” says Ivana.
Now these young parents and their only child are planning how they will spend the upcoming holidays, looking forward to snowflakes, socializing with friends and relatives, and thanking every good person who helped them in their prayers every day.
MORE TOPICS:
Source: Novosti, Photo: Privatna arhiva