Serbian influencer Bojana Mutić loses second son, Maksim, to rare genetic disease

Key facts

• Bojana Mutić announced the death of her second son, Maksim, on social media.
• Maksim was 11 years old and died three weeks after his birthday in hospital.
• His brother, Nikolaj, died at age 12 in 2024 from the same genetic condition.
• Both sons suffered from Pelizaeus-Merzbacher disease, a severe leukodystrophy.
• Mutić said she is withdrawing from public life and suspending all business activities.
• Her fashion brand will continue operating, managed by her team without her public involvement.
• Mutić previously described caring for her sons as requiring 24/7 attention, with up to 50 syringes of medication per child daily.

A second tragedy in two years

Bojana Mutić, a prominent influencer and blogger from Banja Luka, has announced the death of her 11-year-old son, Maksim. The boy died just three weeks after celebrating his 11th birthday in hospital, a milestone she had marked with a poignant Instagram post during the Easter holidays. Maksim’s death follows that of his older brother, Nikolaj, who died at age 12 in 2024. Both children suffered from Pelizaeus-Merzbacher disease, a rare and severe genetic leukodystrophy for which there is no cure. Mutić and her husband lost their first son two years ago; now they have lost both.

A public announcement of private grief

Mutić broke the news on her social media platforms, writing: “My son Maksim has passed away. For the second time, we are facing unimaginable grief.” She explained that she had initially tried to grieve privately among close family, but felt compelled to speak out as it became increasingly difficult to communicate with those unaware of what had happened. She apologized to anyone learning of Maksim’s death through her post, and announced that she would withdraw from public life. All her activities — posts, recordings, collaborations, and agreed projects — would be stopped, postponed, or delayed indefinitely.

Business continuity without public presence

Despite her withdrawal, Mutić made clear that her fashion brand would not shut down. She wrote: “I will not personally promote, present, or publish content related to my fashion brand. However, the basic organizational part of the business will continue to function without my public presence.” Her team, led by an administrator named Jelena, will handle technical and logistical tasks. New collections will remain available through the official web shop. Mutić stressed that this was an organizational notice, not a resumption of usual communication, and asked for understanding and respect for her family’s privacy.

A decade of relentless care

In previous interviews, Mutić described the daily reality of caring for her two sons. Both were completely dependent: they could not walk, stand, sit, hold their heads, move their limbs, speak, eat, or swallow. They suffered from nystagmus, poor vision, reflux, and difficulty breathing. They were fed via gastrostomy tubes and required constant suctioning, inhalation, and oxygen. Mutić detailed that each child experienced dozens of epileptic seizures daily, despite medication. A single dose of one rescue medication cost $500. She described preparing 50 syringes of medication per child per day — 100 in total — and changing diapers seven times daily for each. She said she could not leave them for more than a few meters and slept an average of two hours per day, in 15-minute intervals.

The diagnosis that changed everything

Mutić’s first son, Nikolaj, was born in 2012 after a difficult natural birth and spent time in an incubator. Initially misdiagnosed with cerebral palsy due to perinatal asphyxia, it took years before the correct diagnosis of Pelizaeus-Merzbacher disease was confirmed by a genetic laboratory in Barcelona. Believing the first child’s condition was caused by birth complications, the couple decided to have a second child, hoping for strength. But Maksim, born in 2015, soon showed the same symptoms. Genetic testing revealed both boys had the same incurable disorder. Mutić later said: “My sons cannot walk, stand, sit, or even hold their heads. They cannot move their arms or legs, they cannot see well, they cannot speak, eat, or swallow their own saliva.”

A mother’s testimony of unimaginable burden

In a raw account, Mutić described the impossibility of conveying what 24-hour care for two severely ill children entailed. “If I explained, you wouldn’t believe that such a day could be survived,” she said. She counted five epileptic seizures in one child and ten in the other in a single day, and described the constant cycle of cleaning vomited clothes, bedding, and wheelchair covers — each wheelchair costing 9,000 KM (about €4,600), times two. She wrote that her blog posts and photos were created in fragments: a sentence, then an inhalation, then half a sentence, then a coughing fit, then a therapy session. “I really cannot move away from them more than a few meters,” she said. “Even going to the toilet has to be planned like any other task.”

What comes next

Mutić has not indicated whether she will ever return to public life. Her statement suggests a complete and indefinite withdrawal, though her team will keep the fashion brand operational. The loss of both sons within two years leaves a void that no public statement can fill. For now, the family asks for silence and privacy. Mutić’s final words in her announcement were a plea for understanding: “Thank you for your silence, attention, understanding, and respect for my family’s privacy during this period.” The story, already followed by thousands in Serbia and beyond, is a stark reminder of the hidden struggles behind a curated online life.

The bottom line

• Bojana Mutić has lost both sons, Nikolaj (12) and Maksim (11), to Pelizaeus-Merzbacher disease within two years.
• Maksim died three weeks after his 11th birthday, which he celebrated in hospital.
• Mutić is withdrawing from public life and suspending all personal business activities, though her fashion brand will continue via her team.
• The disease is a severe genetic leukodystrophy with no cure, causing complete physical dependency and frequent seizures.
• Mutić previously described providing round-the-clock care, including 50 syringes of medication per child per day and sleeping only two hours nightly.
• The family has requested privacy and silence as they grieve.