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How teen with a rare genetic disorder finds one-of-a-kind friend

Most people, would agree to the short saying “No man is an island“.

While many of us are capable of living independently, it wouldn’t hurt to have someone who understands exactly what you are going through. Having a friend who truly empathizes with you can make even the hardest of challenges a little bit bearable.

In this world where every person is unique, it is rare to find a genuine friend, and for Austin Niehus of Craig, Colorado, finding someone just like him is a bit more challenging.


Austin is a 17-year-old boy who was born with a rare genetic condition called Goldenhar Syndrome.

Goldenhar Syndrome, also referred to as oculo-auriculo-vertebral (OAV) syndrome, is a craniofacial birth defect of the face and head. It typically affect the ears, eyes, and vertebrae. The condition is extremely rare that the chances of it being present is just one out of 3000 to 25,000 births.

When Austin was born, the doctors told his mom, Kera Niehus, that the possibility of Austin living to see his first birthday was very slim. However, the boy defied the odds. His condition called for continuous facial reconstruction to help him survive, though. At 17, Austin has already undergone over 55 surgeries.

The teenager was already living a hard life because of his condition, and, sadly, he also suffered from bullying throughout his life because of it. But, the Goldenhar Syndrome and all the bullying did not stop Austin from doing the things he love. Just like most teenage boys, he likes playing basketball, going hiking, as well as going fishing.


Despite the love and support from his family and loved ones, Austin still yearned for someone else — someone who can truly relate to him, someone who knows how he really feels. He longed to meet someone who has the same rare condition as him.

However, because of the rarity of his condition, Austin knows that it is very unlikely for him to meet another person with Goldenhar Syndrome.

But through the help of television documentary “Two in a Million” by TLC, Austin finally got the chance he’s been waiting for. According to the cable network, the documentary ‘brings two people together for the first time who share the same rare medical condition, helping them find answers to important questions and share hardships and triumphs.’

Austin and his entire family were very excited when Elena Schefer arrived at their home in Colorado. Witness the heartwarming event when Elena and Austin first met:

When they met, Elena and Austin swam and talked about their hobbies and interests. They also shared their experiences of being bullied. Since their first meeting, the two formed a wonderful friendship. Austin’s mom said that they continued talking through Skype and via texts.

Because Elena and Austin lived in different states, they don’t get to see each other in person often. Elena’s mother, Amy Schefer, set up a fundraiser to help the two friends meet again.

To witness the meeting of two individuals who desperately want to meet each other is moving. But it’s heartbreaking that one of the rare things they have in common was being bullied.

When they met, they didn’t only spend time sharing what they are going through, Austin and Elena also sent a powerful message against bullying:[watch video below]

Bullying is cruel; it will never be acceptable and it will never be right. We should put an end to it now and raise our children in a world where they would share only beautiful, happy memories — a world with no bullies to break Austin’s, Elena’s, and any child’s heart.

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