Despite being taught not to judge by appearances, many still make assumptions based on looks. The Manurung family from Indonesia stands out—four siblings and their father share a rare facial condition. Their faces, once typical, changed over time, making them targets of stares and judgment in their village.
The Manurung siblings didn’t seek medical help until gaining fame on TikTok, yet doctors still couldn’t determine the cause of their facial changes. Speaking on Truly’s YouTube channel, the siblings believe the condition is genetic. Tiur, the unaffected sister, explained they inherited it from their father and that it doesn’t currently affect their daily lives.
Some believe the Manurung family may have Parry-Romberg Syndrome, a rare condition causing facial tissue to waste away. Others suggest Treacher Collins, a genetic disorder affecting facial bone development, or Barber Say Syndrome, a congenital condition present from birth that causes physical malformations. None of these conditions are curable.
“When we walk around our village, we don’t have any problems. No one makes fun of us, no one insults us in our village,” Surya said.
“But if we leave here and go out of town, people who never seen us before for sure, they look surprised when they do. The fact is our faces changed, but we accept it and just live with it. We are thankful for it, it’s a gift from God. That’s how we see it.”
Tiur added: “I feel bad that they’re not like me. I have a normal life without bullying, without being mocked, without being ridiculed by others. When they feel sad because of that, I do too.”
The family decided to use their specific looks to gain the attention of people worldwide and spread a message that we should all embrace our physical appearance and learn to love ourselves they way we are.
They decided to start posting videos on TikTok where have over 2.9 million followers. They post videos of themselves dancing and show the world how they live. At the same time, they use the platform as a way of earning money.
“We went viral on TikTok,” mother Mardiah Manurung said. “Since then people thought we did it for pity, but that’s not true. We’ve used this as an opportunity of going viral of hoping to earn a living to raise our living standards.”
Since the documentary about this family aired on Truly some 18 months ago, Surya got married to a beautiful woman named Shasa Puspita Dew.
This family inspires many and they are the perfect proof that appearance is not everything.
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