21 years ago, Irina Nezhentseva gave birth to her long-awaited daughter. But the new mother quickly noticed that something wasn’t quite right.
Irina discovered her daughter, Katja, was developing wrinkles on her face. As Irina perceived it, her child’s face wasn’t aging by the day, but rather by the hour.
Doctors diagnosed Katja with progeria, an extremely rare disease that causes the body to age prematurely. People affected with the syndrome live an average of 13.5 years, and few live past 16.
Irina’s husband was so distressed seeing his daughter that he left the family.
“I can’t stand the kid,” he said before taking his belongings and leaving them both behind.
But Irina decided to not get discouraged and did everything she could to give her daughter a cheerful and safe childhood. She treated each day with Katja as if it were her last, and showered her with love.
21 years ago, Irina Nezhentseva of Novy Urengoy, Russia, gave birth to a daughter, Katja. Shortly afterwards, doctors revealed that little Katja had a congenital genetic disease called progeria, which causes the body to age about eight times faster than normal. The syndrome is extremely rare and affects approximately one newborn in 8 million.
Heartbreakingly, Katja’s father didn’t want anything to do with his daughter and left the family when he learnt of her condition.
Children with progeria usually look healthy at birth. It’s not until they are 18-24 months old that their aging accelerates. Currently, there is no cure for the disease and most people affected by progeria die in their teens. But Katja is defying all odds.
Katja’s mother, Irina, decided to give her daughter all the love and care in the world. But it wasn’t easy. The other children in her neighborhood made fun of Katja and didn’t understand why she looked different from the rest of them. “Grandma, why are you wearing a miniskirt?” or “Why are you playing with little kids?” the children would ask Katja. Irina was devastated when she heard how her daughter was being treated.
Katja in fact had no awareness that she was any different until she went to school and the other children began to point it out.
“Then I realized that no one liked me. When people saw my face, they were frightened. I asked myself, ‘What have I done to deserve this?’ But I never found the answer,” Katja told Hefty.
“I thought a lot about it,” she adds. “But if I couldn’t be accepted for my appearance, I decided I would try to change my image by showing my inside. I wanted to show that I was also a charming and lovely girl, with a lot of nice features. I’m sure that the most important thing is the human being inside.”
And that’s exactly what she did. Sure enough, people began to look beyond Katja’s disease. She became popular at school and students who harassed her were quickly confronted by Katja’s many friends.
“I accepted myself and learned to love myself. I thought, there are actually only 20 other people like me in the world. Which actually makes me very unique and interesting!”
Katja’s joy surprised most people she met. She grew up to be a confident, young woman with dreams for her future, just like anyone else. Her biggest goal in life? To be happy.
When she was 21, Katja defied the odds again.
She met Denis in a somewhat unexpected way—he called her by mistake after dialing the wrong number. The two started talking, and then agreed to meet. Soon, they were in love. And when the couple decided to marry, Katya was of course delighted.
Soon, the couple had wonderful news. Katja was pregnant and expecting their first child! Some people were skeptical about her decision to have the baby, but Denis and Katya knew what they wanted. And nine months later, they welcomed a beautiful, healthy little son to the world.
“I feel amazing and I’m glad that I’ve had the confidence to help myself through all the difficulties I’ve faced. Now, I have a husband and I’ve been rewarded with a beautiful little son, so what could be better?” says Katja.
Katja’s story is certainly an important reminder that nothing—not even the worst medical diagnosis—can take away our human right to be happy.
Share this story if you are happy for Katja and if you think that more people should have the chance to read her amazing story. Beauty comes from within.