A family fighting for answers

Challenging barriers to inclusion in Serbia

By Keith S. Collins
Aleksa, 10 years old, and Veljko, 4 years old, playing together in their home, in Berlgrade, Serbia, 19 November 2017.
UNICEF/UN0261207/Pancic
01 December 2018

Before doctors finally confirmed Aleksa Jovanovic’s condition three years ago, his family had received fifteen different diagnoses. The ten year old from Krnjaca, Belgrade in Serbia has spinal muscular atrophy type 3 (SMA3); and so does his four year old brother, Veljko.

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

Aleksa began showing symptoms before his second birthday. Now he is unable to walk. Over the years, the family visited many doctors. Some did not know how to treat Aleksa, or where to refer the family for help.

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

Magrita had to leave her job to take care for her sons Aleksa and Veljko.
UNICEF/UN0261208/Pancic
Magrita had to leave her job to take care for her sons Aleksa and Veljko.

Veljko attends a kindergarten. Aleksa is in third grade. He travels to nearby Borca where he can get into the school and classroom in his wheelchair, as the local primary would be impossible for him to access. His teacher is doing everything she can to support him.

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

However, it is not clear if Aleksa will be able to continue past fourth grade. Classes are upstairs and there is no elevator.

At home, Aleksa’s parents do the physiotherapy the boys need themselves. They were forced to hire a private specialist to teach them as there is no provision in the local hospital.

Mother Margita, father Branko Jovanovic help their two boys: Aleksa, 10 yeas old, and Veljko, 4 years old, with their daily exercises.
UNICEF/UN0261209/Pancic
Margita and Branko help their two boys: Aleksa, 10 yeas old, and Veljko, 4 years old, with their daily exercises.

They keep abreast of the latest information and treatment options for the boys, and they get support from the Dystrophy Association of Serbia and the National Organization of Persons with Disabilities.

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

Despite every obstacle they encounter, the family is determined to keep fighting.

 

 

*This vital work is supported by the European Union funded Protecting Children from Violence and Promoting Social Inclusion of Children with Disabilities in Western Balkans and Turkey multi-country Action. Learn more about this work.