The only certainty is uncertainty

Ten-year-old Aleksa and four-year-old Veljko Jovanovic are brothers. They live on the outskirts of Belgrade, in Krnjaca, with their mom, dad, and grandparents.

In 2015, both boys were diagnosed with spinal muscular atrophy type 3. 

"This is a rare disease that weakens muscles - arms, legs, the heart, lungs..." their father Branko explains.

Aleksa was not yet two years old when he showed the first symptoms. The initial diagnosis was – flat feet.

The family had to wait another 6 years for the correct diagnosis, explains Margita, the boys’ mother.

Meanwhile, Margita became pregnant again. Doctors assured her that her second child would be healthy. That was not the case.

Three years ago, Aleksa completely lost his ability to move, while Veljko, who is six years younger, is already has difficulty moving.

Margita recalls that, from the moment Aleksa showed the first symptoms until the SMA 3 diagnosis, he was diagnosed with 15 different illnesses.

She says that some doctors did not know where to refer them to seek help, which institution to turn to, or which exercises they needed.

“When it comes to disability-related financial support, you go to the doctor and ask, and she says she doesn’t know what you're talking about. Information is mainly shared by parents, in those gatherings, because we understand each other,” Margita explains.

For this family, every day is a challenge.

“Aleksa’s grandma cannot help to get him up any more. I'm also having a hard time taking him to the toilet, the table, bed, or the living room. He spends the entire day sitting. You have to bring him water, or move his legs. During the night, he wakes up five, six times, and asks me to turn him," says Margita.

Veljko attends a kindergarten. Aleksa goes to third grade. He can access the school and classroom in his wheelchair.

“We have a school here in Kotez, but the school is not disability friendly -  it does not have a ramp, elevators, the conditions are not suitable. In Borca they helped us out and we are really satisfied”, explains Margita.

It’s uncertain whether Aleksa will be able to continue with his schooling after he finishes fourth grade because the school doesn't have an elevator that provides access to the classrooms on the upper floor. 

At the moment, Aleksa is not worried about that. His uncle, who is also his personal escort, helps Aleksa make the trip to school and back home.

Thanks to the professionalism and dedication of his teacher, Aleksa does not feel excluded because of his disability. 

“The teacher explained to my friends that I cannot do certain things, that I have a problem with climbing stairs, running, walking, squatting, getting up, jumping, crawling,” Aleksa explains.

The nearest hospital is not close to their house and doesn’t offer the needed physical therapy and rehab facilities. This meant that the Branko and Margit had to get by on their own.

"When you go to the doctors and they tell you – the children need exercises, but we don’t have the appropriate space now, or we are full right now, so we don't know how you’ll manage. Or they give us exercises, but at a facility which is very far away. In the end, we were forced to hire a physiotherapist who showed me the exercises", Margit says.

The family had to make other adjustments as well. Aleksa and Veljko stopped going to birthday parties. It was hard for Branko and Margit to stand by and watch their boys being unable to play with their friends.

The fact that parks and playrooms don’t have facilities for children with disabilities made things only worse.

"I feel helpless. I wish, like every parent, I could help them enjoy at least a small part of childhood, like other children," Branko says.

Despite these obstacles, this family keeps fighting every day. They get information about the disease, and treatment on their own, but also from the Dystrophy Association of Serbia and the National Organization of Persons with Disabilities. 

“They helped us with the documentation for the car, wheelchair, disability assessment, with things we didn't even know about. they told us that Veljko is eligible for a free kindergarten programme,” Margita explains.

The drug Spinraza, which is already being prescribed to patients in the US and EU, gives them hope. There is a parents' initiative in Serbia for the drug for SMA to be placed on the white list, and thus be financed by the Republic Health Insurance Fund.

The Ministry of Health announced that this treatment will become available; initially the drug will be for those patients who need it the most.

According to their current assessment, Veljko and Aleksa are not among this group of patients. The Jovanovic family does not have the money to buy the drug, because it’s very costly, and since this is a life-long disease, so is the treatment.

Margita is now hoping that the state will cover the treatment costs for all children.

“The hardest thing now is that we have the cure within our reach, but we don’t actually have it. And then you always wait for something, you wait for papers, you wait for procedures, you wait for examinations, you wait to see whether you will be on the list, you wait until something is resolved. There's no time. We are running out of time. I cannot wait, for a month, two, or three, or to be told it’ll happen in a year, two, or three years. I don't have that much time. By then I will lose two children,” Margita explains.

Margita left her job and has fully dedicated herself to her children. Still, she's afraid of what the future will bring.

“I will not live forever. I want to know that somebody out there knows that in this home, and in other homes with similar problems, there are children who will be left to fend for themselves, who cannot eat on their own, drink or go to bathroom, or to a store.”

Veljko would like to learn karate and aikido. Aleksa's greatest desire is that they get a cure, and for all of them to be healthy.

He sees us off with the words: "Support really means a lot, because without support we cannot do anything."

 “If I were to choose my life again, maybe I would choose Veljko and Aleksa again,” says Branko barely holding back tears.