A fashion influencer is mourning the loss of her second child just two years after her older son died from the same rare genetic condition.
Bojana Mutić announced the passing of her 11-year-old son Maksim on Instagram for her 90,000 followers.
The 45-year-old said her son died from Pelizaeus-Merzbacher disease (PMD), a rare incurable genetic neurological disorder that primarily affects males.
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Maksim’s passing comes two years after the death of his older brother Nikolaj, who succumbed to the same condition at the age of 12.
Both boys suffered from PMD, a leukodystrophy caused by mutations in the PLP1 gene on the X chromosome that disrupts myelin production in the central nervous system.
The progressive disorder, which affects approximately one in 200,000 to 500,000 people, leads to severe developmental delays, muscle weakness, nystagmus, swallowing difficulties, frequent epileptic seizures, breathing problems and recurrent infections.
Maksim, born in 2015, showed symptoms shortly after birth, mirroring those of his older brother, as reported by NeedToKnow.
Initial misdiagnoses had suggested cerebral palsy for Nikolaj before genetic testing in Barcelona confirmed PMD in both children.
Bojana, who comes from Banja Luka in Bosnia and Herzegovina, said on social media: “Dear all, my son Maksim has passed away.
“For the second time, we are facing unimaginable grief.
“I believe you will understand our need to spend the previous days in the circle of our closest ones, in silence and without public announcement.”
She added that she would withdraw from public life, pausing her fashion brand activities, collaborations and posts until further notice.
She said: “I would like to inform you that in the coming period I will be withdrawing from the public sphere.
“All my activities – publications, recordings, collaborations and agreed projects – will be stopped, postponed or prolonged until further notice.”
In earlier interviews, Bojana described the relentless daily battle of caring for her sons, who could not move their limbs, swallow saliva or speak, and endured dozens of seizures each day.
“I have to watch their heartbeats, turn them, check them,” she said.
“It sometimes happens that I go three days without sleep.
“Every day is a battle for life.”
She gave around-the-clock caregiving, often with minimal support, while also raising awareness of the rare condition through her Instagram account.
Bojana continued to care for Maksim after Nikolaj’s death in 2024.
She gave birth to daughter Militsa in summer 2023.
PMD has no cure or disease-modifying treatment; care is limited to symptom management such as seizure control, physical therapy, feeding support and infection prevention.
Bojana’s public sharing of her family’s journey had inspired many with her messages of love, patience and resilience, as she called her sons her “greatest fighters”.
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