The Banjaluka Civic Association “Heart in Hand” launched the humanitarian number 1415 to help one-year-old Sofija Markuljević from Belgrade, who suffers from a progressive neuromuscular disease, and who needs a medicine that costs $ 2.1 million.
Head of the Association, Anastasija Ćorović, told SRNA that the medicine “Zolgensma” is currently registered only in the USA and is taken only once in a lifetime, before the second year of life.
“Sofia was born as a healthy baby, but when she turned second month she completely stopped moving her hands. At the age of two and a half months, she was diagnosed with a rare disease – spinal muscular atrophy type one,” said Ćorović.
She noted that this disease, which is fatal, is manifested by progressive muscle atrophy and loss of basic vital functions, such as walking, digestion, swallowing and breathing.
“The cost of medicine is of incredible 2.1 million dollars, and another 300,000 dollars is needed for additional treatment costs. Humanitarian actions are taking place in Serbia for long time,” said Ćorović.
She also says that humanitarian number 1415 for “M: tel” is being active until the end of May, but that the humanitarian action will continue after that, through other operators.
Ćorović notes that the girl’s father, Stefan, who was born in Banjaluka, is a fitness coach for Serbia’s volleyball team, and that his colleagues and well-known athletes have got involved in the “For Sofia’s first step” campaign.