30-year-old Ivanka Danisova from Bratislava was born a triplet in Slovakia. Doctors said she would die young because of a congenital birth defect called Goldenhar syndrome but she since proved them wrong.
Goldenhar syndrome, also known as oculo-auriculo-vertebral (OAV) syndrome is a rare congenital defect that is present at birth, it usually affects the ears, eyes, and spine. Its symptoms include facial asymmetry, a partially formed or absent ear, spinal abnormalities and noncancerous growths on the eye.
This condition also affects some internal organs leading to severe heart, kidney, lungs and oncological diseases.
Unfortunately, the exact cause of Goldenhar syndrome has not yet been discovered but is linked to problems that occur while the fetus is developing.
When Ivanka received the sad news about her condition, she was shocked and confused. An overwhelming feeling of sadness engulfed her as she wondered why this was happening to her.
“When I was diagnosed, I was given no hope. I wasn’t even supposed to survive,” Ivanka told Caters News. “When I found that out, I was stunned at first, and those cruel and harsh words lingered with me long after I had left the doctor’s office. I didn’t understand why me.”
Growing up, Ivanka faced a lot of hardships because of her birth defect. The rare condition caused the right side of her face to under-develop. She could not hear from her right ear and her immune system was weakened. Despite all this, she was constantly bullied in school and other public places. People deemed her different and always looked down on her as an outcast.
“My childhood was not a walk in the park, as there were moments when I was shown in a cruel way that I am ‘different,’” she said.
But due to the kindness of her sisters, Ivanka was able to persevere through the difficult situation.
She explained, “For more than 27 years I had to be very careful. I could never hear on the one side and I couldn’t do sport actively. ‘Underdeveloped ear canal caused that I suffered harshly every time I had the flu.”
She added, “ I had to put up with severe complications during my fight and consistently weak immunity. I know that I had the greatest luck in my life by being born among triplets,” she said. I am grateful to my sisters for bringing up that brave and fearless Ivanka who is not afraid of anyone and anything.”
In Spite of her illness and cruel comments from the bullies, Ivanka has come out strong and successful. She has defied all odds; the bullies who always reminded her that she was different and the doctors who assumed that she would not survive for long and has become the first European to undergo life-changing treatment for the condition in the US.
Professor Russell Reid, a world-renowned specialist based in Chicago, carried out two procedures, one that lasted for 20 hours and the other 11, to reconstruct the junior lawyer’s face.
She will go back to Chicago in September to have one final operation to help her lead a normal life, incase she raises the funds.
Before the treatment, Ms. Danisová, who studied in the UK, turned her unique looks into ammunition to spread awareness for fellow sufferers through social media.
Ivanka revealed that she has always ignored the mean comments from bullies and she did not let her health problems deter her from achieving her dreams in life.
“Despite many obstacles, I have always viewed myself as a child with vision and goal in her life and nobody and nothing could stand in my way.
“As I was growing up, I learned to strengthen my confidence, because when I was little, I wasn’t the brave person that I am now.
“I was a small, timid little girl who fought for every success in school, to succeed and show everyone that one day I will grow up to be worthy,” She said.
Through determination and hard work, Ivanka managed to launch a campaign called ‘Rainbow for Ivanka’ for other Goldenhar syndrome patients.
Currently, Ivanka is well known for taking numerous selfies while covering one part of her face – hiding her defect, but it’s not because she is ashamed of who she is.
She takes the photos for her campaign which spreads awareness of Goldenhar syndrome. She hopes that other people will also take selfies covering half their face and that those like her will soon feel free to unapologetically show their true selves.
“Rainbow for Ivanka encourages people to take a selfie with one-half of their face covered in solidarity,” Ivanka said. “I refuse to accept that this condition should still be a ‘taboo’ in Slovakia, and that these children are viewed as unacceptable for this society.”
Ivanka is very grateful to her two sisters(triplets) for being her shoulder to cry on and a constant support system. She said:
“I know that I had the greatest luck in my life by being born among triplets. My sisters were always very strict with me and didn’t allow me to feel pity or give up, no matter how impossible I thought it was for me.”
“I am grateful to my sisters for bringing up that brave and fearless Ivanka who is not afraid of anyone and anything. Thanks to my sisters I didn’t feel different, rejected. They never let anyone hurt me in any way,” She added.
Ivanka concludes by saying,
“In the future, my biggest dream is to look at the world as a healthy rainbow child and continue in my work as a junior lawyer, study law at Harvard and finally to have a normal life without surgery.”
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