Woman born with rare face condition is raising awareness and inspiring others
Posted August 9
Ivanka Danišová was born with a rare condition called Goldenhar syndrome, which has affected one side of her face. She spent much of her life covering up and feeling the need to hide her birth defect, but now she’s speaking out and taking a stand.
Danišová is now 30 years old, and is determined to create a better life for herself and for others with Goldenhar syndrome. The rare congenital disease affects the development of the ear, eye and spine, mainly, but can also affect the heart, lungs, kidneys and central nervous system, according to the National Institutes of Health. One out of 25,000 babies are born with this.
On top of that, Danišová has also been diagnosed with leukemia. But, she’s not letting that stop her from achieving her goals.
She’s started the Rainbow for Ivanka Campaign to raise awareness about Goldenhar syndrome and to help normalize the condition.
“The rainbow is a symbol of hope, strength, fragility, purity,” she wrote on the Rainbow for Ivanka funding page. “My goal and life wish is to fight for kids like me in Slovakia and in the Czech Republic. To be honest, I cannot and I would not leave the issue as it is now. My soul and my heart cannot understand why the topic of Goldenhar syndrome has remained unknown and left with no help for the whole 20 years. There is no foundation, project or campaign. And the reason is that in Slovakia and in the Czech Republic there are only about 30 children with this diagnosis, and it seems like there was not enough time and space for the medical science and the society to find a solution and to help these children, I think. I have decided to fight for other children, too.”
By sharing her story and undergoing surgery in America, she’s working to spread awareness and inspire confidence.
She understands the journey will not be easy, but she’s more than up for the challenge.
“It will be very difficult period of my life because I am fighting both leukemia and a craniofacial [surgery] - I would like to win,” she told Caters. In the future, she hopes to “continue as a junior lawyer, study law at Harvard and finally to have a normal life without surgery.”
For more information and to follow along with her journey, visit the Rainbow for Ivanka Facebook page.