By Josh Saunders
A woman with HALF A FACE is completing surgery to rebuild her right side after being born without craniofacial bone and tissue.
Ivanka Danisova, 30, celebrates nearly having all of the important craniofacial bones for the first time in her life, as well as finally being able to hear and chew on the right-hand-side.
The junior lawyer, who trained in the UK, has undergone four surgeries to reverse the effects of Goldenhar Syndrome, which prevented her bones from properly developing.
It was feared she would die young due to Goldenhar Syndrome – a rare congenital birth defect.
She was bullied throughout her life because of her facial difference, only finding solace while hiding behind her hair for many years.
She flew to the University of Chicago Medicine, from Illinois, USA, for the lifechanging surgery that will now lead her to live a normal and fuller life.
Surgeons operated for 13-hours creating bone to construct the hinge joint that connects the temporal and jaw bones together
As well as bulking out tissue to give her a more naturally shaped face – it’s hoped her surgery can be completed this summer.
Surgeons will enlarge her eye orbit because she never developed an orbital bone, alongside more soft tissue on the right side of her face to allow her a better life .
Ivanka, from Bratislava, Slovakia, said: “I am the happiest person in the world because I have successfully undergone another crucial craniofacial surgery in my life.
“It is something you can´t describe with words as it is the most beautiful feeling in the world now that my hope to live life like a healthy person is a reality.
“This moment was a crucial milestone in the next stage of my life, it’s not and it never is easy for people with craniofacial diagnoses but to anyone struggling, you should never give up hope.
“In my heart I will still be like a craniofacial child, because we look at life from a completely different perspective – in my soul and in my heart, I am the same Ivanka despite looking different.
“It is really unbelievable how we, craniofacial children, must always fight for the hope to live a full life.
“My craniofacial fight has not only opened the door to a better future but it has mainly brought me the feeling of having all important craniofacial bones for the first time in my life.
“Of having a temporomandibular joint for the first time in my life, as well as mandibular and cheek bones.
“Now I can hear with my right ear and eat on the right side for the first time in my life.”
Ivanka was the first European to undergo the life changing treatment for her condition in the US.
She was treated by Professor Russell Reid MD, PHD from the University of Chicago Medicine.
Ivanka said: “The focus was on soft tissues, it was a continuation of a demanding surgery of craniofacial skull, it proceeded down to the supraperiosteal plane to solve soft tissues and facial paralysis.
“Then surgeons solved my right temporal area and cheek area – areas where I have not developed soft tissues for better moving and function.”
Prior to surgery, Ivanka had hidden her face behind her hair, often bullied by strangers and struggled to contend with the stigma associated to being different.
Last year she shot to fame with her ‘Rainbow for Ivanka’ campaign that encourages people with craniofacial differences to hide half of their faces – raising awareness.
She credits her twin sisters with instilling confidence into her, after her parents and grandfather died at an early age.
Ivanka said: “We do the selfie because the biggest dream of each rainbow children one time to uncover your hand on one half of face.
“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.”
Goldenhar syndrome, affects one out of 25,000 babies at birth, it alters one side or both sides of the face, with abnormalities appearing mostly around the ears, eyes and spine in varying degrees.
The condition also affects some internal organs leading to severe heart, kidney, lungs and oncological diseases.
Ivanka who also has battled Leukaemia three times and had four major heart surgeries, continues her fundraising efforts to cover the costs of her medical treatment.
She said: “Each day for me is very difficult with my rapid arrhythmia, pains with leukaemia, and this craniofacial fight but I believe that I can win. I am thankful for every day.
“I will be grateful for any financial support via gofundme so that I won’t have to bear the entire financial burden alone.
“I will happy if you can help me share my story to support me – postcraniofacial reconvalescention, supportive treatment during chemotherapy of leukemia , my last craniofacial fight.
“It is not and it never will be easy – to be born as a child with a craniofacial diagnosis but as long as there is hope, you should never give up.”
You can donate by visiting: www.gofundme.com/IvkaDanisova