Ever since we were little children, our parents taught us to never judge people based on their physical appearance. Sadly, there are still those who make assumptions about others based on their looks.
Although being different means being special and unique, those people who don’t fit the ‘standards’ imposed by the society can easily fall victims of stares and bullying.
A family from Indonesia, the Manurung family, are unlike the rest of the people from their village.
Four out of six siblings, together with their father, suffer from a mysterious facial condition.
Their faces look exactly the same, and according to them, they changed over time.
Unfortunately, they hadn’t visited a doctor in order to try to detect the cause of their condition until they became famous on TikTok. Even then, no one was able to detect the exact reason which lead to these people’s faces to change drastically.
Recently, sisters Sri, Mairani, Tiur, and their brother Surya appeared on camera for the YouTube channel Truly where they spoke of their condition and how it affects their lives. After considering a number of theories, the siblings settled on the idea that their condition is a result of genetics.
“I always used to think about it; Why am I so different to my sisters and brother?” Tiur, the only sibling without the condition, told Truly.
“But when I got older, what I realized was that it must be genetics from our parents. My sisters and brother inherited it from my father, and I am more like my mother.
“We think that their condition right now isn’t a problem day-to-day. If it did cause problems, like tiredness, they would go to the doctor for a check-up,” Tiur explained. “Now, their condition doesn’t affect their lives, so it’s not an issue.”
As they haven’t been provided with a diagnosis, because doctors are unable to find out what exactly caused these siblings’ faces to change, there are a few possible explanations.
According to some, the members of this family might be suffering from a rare condition called Parry-Romberg Syndrome which according to the National Institute of Neurological Disorders and Stroke is a condition “where the tissue of one side of the face gradually wastes away.” This condition is incurable but “immunosuppressant drugs and other medicines may help treat some neurological symptoms. Other treatment focuses on treating other symptoms.”
Another possible condition the Manurungs might be suffering from is Treacher Collins, a genetic disorder resulting in congenital craniofacial malformation which affects the development of bones and other tissues of the face.
A third possibility could be the so-called Barber Say Syndrome, which is usually present from birth and causes malformations in a newborn’s body.
The siblings are well accepted by the people who live in the village, but when they go to the town, they usually get stared at.
“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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