It is a parent’s job to protect and care for their children no matter what.
It is no different for the parents of Vitória Marchioli. Their daughter is battling a condition no child should ever have to endure.
Due to a rare genetic disorder, Vitória was born without a face. Now doctors have credited the love and dedication of her parents Ronaldo and Jocilene for Vitória defying the odds and reaching her ninth birthday.
The little girl from Barra de São Francisco in Brazil has Treacher Collins syndrome. The disorder has prevented 40 of her facial bones from developing properly.
As a baby doctors doubted she would survive her first few hours of life.
They even refused to feed her. Medical experts told the family to go home and wait for their daughter to die.
Her father Ronaldo, 39, said: ‘Doctors can’t explain how she has lived so long, but they believe it is down to our care and the love we have for her that has kept her alive.’
‘We’re hoping to continue fundraising to give our daughter a better quality of life and giving her the best appearance we can.’
‘We fight for her so that she can look better and have a better quality of life. We love her and are thankful for having her alive.’
Treacher Collins syndrome affects just one in 50,000 people.
At two days old, Vitória was transferred to a specialist unit where her condition was diagnosed.
Since then the brave little girl has had a number of surgeries to reconstruct her eyes, nose and mouth.
She has most recently received surgery at the Shriner’s Hospital in Texas, USA.
Ronaldo Marchioli, who works as a contract chauffeur, said: ‘She looked a little strange when she was born she had a big opening on her face and a very open eye, she was different from our other children.’
‘Doctors told us she would not survive and that she only had one or two hours to live, they didn’t give her any chance of survival.’
‘She was transferred to a specialist unit at another hospital in the capital to get more information on her health and the condition.’
‘She does not have a well-defined bone structure because 40 of the bones in her face did not form, which affected her eyes too.’
Despite their daughter’s fierce battle Ronaldo and mom Jocilene, 43, say they are grateful for their little girl’s life.
‘She does not have any life expectancy, we do not know how long she will survive, we didn’t expect her to make it until her ninth birthday but are so grateful she has,’ added Ronaldo.
But despite the family’s unimaginable hardship they regularly receive nasty comments about their daughter’s appearance.
Ronaldo said: ‘We have been verbally abused and rejected by the public because of the appearance of our daughter.’
‘Even our other daughters have told us that children at school verbally abuse them for the appearance of Vitória.’
When Vitória was first brought home the family would wake-up every three-hours to feed her. This was done through a tube pushed down her throat into her stomach.
Everyone took turns to regularly check she was not choking or putting herself in harm’s way.
Ronaldo said: ‘Vitória receives all the care, affection and possible love that we can give her, we try every day to help her as much as we can.’
‘In future, we hope humanity will have more love for people independent of their appearance, skin colour, race, religion and more.’
Vitória’s parents are fundraising towards her medical costs. To donate to their cause visit here.