Woman, 30, born with 'half a face' undergoes incredible corrective surgery in the US to fix birth defect that saw her tormented by bullies

  • Ivanka Danisová was born with Goldenhar syndrome - a congenital birth defect 
  • The junior lawyer was told she would die young as a result of the rare condition
  • She spent most of her life covering up the side of her face with her long hair
  • The 30-year-old has defied medical expectations and has undergone treatment
  • She will travelling back to the US in September for one final operation 

A Slovakian lawyer born with half a face has undergone life-changing corrective surgery in the US.

Ivanka Danisová, 30, from Bratislava, was born with a congenital birth defect that saw her tormented by bullies throughout her childhood.

Her condition, Goldenhar syndrome, caused underdeveloped cranial bones on the right side of her face - and doctors thought it would kill her.

She spent most of her life covering up the defect with her long hair - as well as battling cruel comments from strangers. 

But she has defied medical expectations and her bullies, 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 travel back to Chicago in September to have one final operation to help her lead a normal life, so long as she can raise 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 Danisová, 30, was born with a congenital birth defect that saw her tormented by bullies throughout her childhood (believed to be pictured before pioneering treatment in the US)

Ivanka Danisová, 30, was born with a congenital birth defect that saw her tormented by bullies throughout her childhood (believed to be pictured before pioneering treatment in the US)

Before: Danisova would cover her face with sunglasses and accessories to hide her condition
Before: Danisova would cover her face with sunglasses and accessories to hide her condition

Before: Danisova would cover her face with sunglasses and accessories to hide her condition

Ivanka launched the campaign 'Rainbow for Ivanka' for other Goldenhar syndrome patients. She encourages people to take a selfie with one half of the face covered to increase awareness through social media (pictured after her procedure)

Ivanka launched the campaign 'Rainbow for Ivanka' for other Goldenhar syndrome patients. She encourages people to take a selfie with one half of the face covered to increase awareness through social media (pictured after her procedure)

Ms Danisová said: 'When I was diagnosed, I was given no hope. I wasn't even supposed to survive.

'When I found that out, I was stunned at first and those cruel and harsh words lingered on me long after I had left the doctor's office. I didn't understand why me.

'[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 a flu.

'I had to put up with severe complications during my fight and consistently weak immunity. ' 

Goldenhar syndrome, which affects one out of 25,000 babies at birth, can affect one side of the face or on the both and abnormalities appear mostly in the areas of ears, eyes and spine in varying degrees.

The condition also affects some internal organs leading to severe heart, kidney, lungs and oncological diseases.

Ms Danisová successfully underwent the first 11-hour-long craniofacial surgery as well as the second procedure that lasted 20 hours

Ms Danisová successfully underwent the first 11-hour-long craniofacial surgery as well as the second procedure that lasted 20 hours

Professor Russell Reid (pictured), from the University of Chicago Medicine, was behind the procedure to reconstruct her face (Ms Danisová is pictured with her sister Monika)

Professor Russell Reid (pictured), from the University of Chicago Medicine, was behind the procedure to reconstruct her face (Ms Danisová is pictured with her sister Monika)

The Slovakian, who was told she would die young, has become the first European to undergo life-changing treatment for the disorder in the US (believed to be pictured before the procedure)

The Slovakian, who was told she would die young, has become the first European to undergo life-changing treatment for the disorder in the US (believed to be pictured before the procedure)

In Ms Danisová's case she suffers from cardiac arrhythmia and was also diagnosed with leukaemia three years ago.

She said: '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".

When I was diagnosed, I was given no hope. I wasn't even supposed to survive
Ivanka Danisová, 30

'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.'

Ms Danisová has since launched the campaign 'Rainbow for Ivanka' for other Goldenhar syndrome patients.

She encourages people to take a selfie with one half of the face covered to increase awareness through social media.

She said: 'We do the selfie because the biggest dream of each rainbow children one time to uncover your hand on one half of face.

She spent most of her life covering up the defect with her long hair - as well as battling cruel comments from strangers

She spent most of her life covering up the defect with her long hair - as well as battling cruel comments from strangers

Ms Danisová has even turned her unique looks into ammunition to spread awareness for fellow sufferers through social media

Ms Danisová has even turned her unique looks into ammunition to spread awareness for fellow sufferers through social media

Ms Danisová credits her other two triplets Janka and Monika (pictured together) for becoming the person she is today

Ms Danisová credits her other two triplets Janka and Monika (pictured together) for becoming the person she is today

Ms Danisová said: 'Thanks to my sisters I didn't feel different, rejected. They never let anyone hurt me in any way' (pictured: Monika, left, and Janka, right)

Ms Danisová said: 'Thanks to my sisters I didn't feel different, rejected. They never let anyone hurt me in any way' (pictured: Monika, left, and Janka, right)

WHAT IS GOLDENHAR SYNDROME? 

Goldenhar syndrome is present at birth and mainly affects the ears, eyes and spine. 

Main symptoms include facial asymmetry, a partially formed or absent ear, spinal abnormalities and noncancerous growths on the eye.

The condition also affects some internal organs leading to severe heart, kidney, lungs and oncological diseases. 

The exact cause is unknown but is linked to problems that occur while the fetus is developing.

Up to two per cent of sufferers have a relative with the condition, which suggests there may be a genetic link.

Treatment focuses on aiding feeding, breathing and speech, as well as preventing hearing loss.

Source: Genetic and rare diseases information center  

Advertisement

'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.

'Many people that met me have told me that I am a messenger of positive energy and that I give away smiles.'

She credits her other two triplets Janka and Monika for becoming the person she is today.

Ms Danisová 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.'

Now she is fighting to finish her last treatment in the US after being contacted by one of the world's most prestigious craniofacial surgeon, Professor Russell Reid from the University of Chicago Medicine.

Ms Danisová added: 'I hope and believe that last surgery in September will improve my life.

'It will be very difficult period of my life because I am fighting both leukemia and craniofacial fight - I would like to win.'

'In the future my biggest dream is to look at the world as healthy rainbow child and continue in my work as a junior layer, study law at Harvard and finally to have a normal life without surgery.' 

Those wanting to donate to help raise funds for the third surgery can do so here.

Ms Danisová said: '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"'

Ms Danisová said: '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"'

The comments below have not been moderated.

The views expressed in the contents above are those of our users and do not necessarily reflect the views of MailOnline.

We are no longer accepting comments on this article.