#saveivanka

My name is Ivanka. I was born with a very serious diagnosis: the Goldenhar syndrome. I’d like to thank with all my heart to all the good people who collected 168 309 dollars needed for my acute surgery. The insurance company doesn’t pay for my life-saving operation. You can donate up to the 3rd of May as planned. All the extra money you still send and I’m grateful for will stay on my transparent account and will be used only to cover costs that have direct reference to my operation – additional examinations, CT scans, X-rays. I also have to pay this all by myself. One more time: a big thank you to all of you.

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My name is Ivanka Danišová. I’m a triplet and I have 2 most wonderful sisters in the whole world – Janka and Monika.

I was born with a very serious and exceptional craniofacial diagnosis: the Goldenhar syndrome. This syndrome became my life´s biggest challenge, though according to doctor´s predictions, my prognosis was bad, I have completed my university studies, focused on law, I am a successful lawyer. Law is a meaningful platform for me, because it allows me to help other people in need.

According to doctors I would not survive my first year. But luckily, I am HERE. Goldenhar syndrome is a rare congenital defect characterized by incomplete development of parts of the face (ear, eye, and mouth) and cranial bones (temporal bone, cheekbone and orbital bone), in different ranges. Patient has undeveloped jaw, misses auditory system, has underdeveloped ear, lives without temporomandibular hinge and at the same time is fighting affiliated problems: internal organs illnesses – heart, spine, leukaemia…

Children born with Goldenhar syndrome unfortunately face a real medical torture and mental bullying since very early childhood. I am at a very serious stage of the syndrome and am affected by all complications that the illness brings. I underwent several operations – 5 reconstructive surgeries for my facial and skeletal asymmetry which is inherent to my diagnosis, 4 heart surgeries, and I’m fighting with leukemia… for the third time. I will most likely undergo one more operation.

I came over a sudden abdominal inflammation, I went through 4 very complicated craniofacial operations in the USA, in Chicago thanks to world-known wonderful craniofacial surgeon, professor Russell Reid. During those mentally, physically and emotionally challenging times, my beloved parents, who meant everything to me, passed away.

I promised my beloved parents that I will do all within my power to win my life battle with the disease and finally feel HEALTHY for the first time in my life – craniofacially, cardiological and oncological.

Under the leadership of the top craniofacial surgent/professor Akira Yamadu, the doctors in USA were able to return my hearing to me, I could hear for the first time in my life. They constructed a new ear for me during a 10-hour challenging reconstruction surgery.

Doctors in the US were even able revitalize all my missing facial bones. Professor Dr. Russell Reid from The University of Chicago Medicine , world´s respected professor in craniofacial surgery, gave me world´s most precious gift – facial bone implants , reconstruction of jaw  as a result, my face is as functional as every healthy human´s face.

In May 2019 I have to undergo an ACUTE reconstruction of my jaw joint in Chicago. A recently taken CT scan showed the formation of new bone in this part. It afflicts an extremely rare number of patients. Only 1.24 % and I am one of them. The diagnosis was confirmed 10 days ago I have acute swelling of the right side of my face, immense jaw pain, and difficulty chewing.

Thanks to urgent help of professor Reid, I can handle my currently craniofacial state – but I still need the surgery. I can lose my facial functions – across dysfunction jaw , which compromises my daily functions.  Even if the operation is my only saviour, the insurance company denied paying for my surgery in the USA. It was denied even that THE UNIVERSITY OF CHICAGO MEDICINE is the best hospital in the world with the greatest craniofacial experiences – to go for this surgery with professor MD Russell Reid as my craniofacial surgeon. It was denied despite the fact, I will lose function of my bone implant (jaw) without this operation.

Note: I am a regular working human being, tax and insurance payer.  You are my only hope…

After the surgery in Chicago, I will undergo my last craniofacial operation during the autumn in Japan – surgery of the orbital part and reconstruction of my soft tissues. I am one of only 30 living people with with such a complicated course of this diagnosis ( leukemia, cardiac arrhythmia , missing cranial bones, the most difficult craniofacial anomalies regarding the orbital problem ) with – your donation can help me live a full quality life.

I’d like to thank with all my heart to all the good people who collected 168 309 dollars needed for my acute surgery. The insurance company doesn’t pay for my life-saving operation. You can donate up to the 3rd of May as planned. All the extra money you still send and I’m grateful for will stay on my transparent account and will be used only to cover costs that have direct reference to my operation – additional examinations, CT scans, X-rays. I also have to pay this all by myself.

I thank you againwith all my heart, because it’s not only my mission. It’s OUR MISSION.

Share my story

I really appreaciate if you share my story on social networks. The link to my website, video with my story (download links below) or you can take a selfie with half of your face hidden – that’s my symbol. If you add the hashtag #saveivanka, it will be perfect. Sharing is not only the way to let people know about my case, but you will also help to spread the information about the serious Goldenhar syndrome. Every support counts. Thank you!

Video downloads

Link for sharing the video with my story: https://vimeo.com/329910425

You can also download the video in different aspect ratios and share it for example as an Instagram story. Download the video by taping the image below:

Original video

Aspect ratio: 16:9

The original video in full lenght.

Instagram version

Aspect ratio: 1:1

The video is cut in 3 parts, as Instagram allows video up to 60 second only.

Instastory version

Aspect ratio: 9:16

The video is cut in 3 parts. Once you upload the video to the story, Instagram will automatically create the 15-seconds story „chapters“.

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Contact for media:

Kateřina Etrychová

cell phone: +420 736 531 105
Communication in English, French, German, Czech