A girl who was born without a face because of a rare condition has defied the odds to reach her ninth birthday thanks to her family’s love. Vitória Marchioli, from Barra de São Francisco in Brazil, has the genetic disorder Treacher Collins Syndrome which prevented 40 of her facial bones from developing properly.
As a baby, with her her eyes, mouth and nose displaced, doctors doubted she would survive her first few hours of life. They even refused to feed her, told the family to go home and wait for their daughter to die and to start making funeral arrangements.
But earlier this month, she reached her ninth birthday, defying medics who say the only reason she is alive is due to her parents’ thorough care and devotion. 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 and a week later her doting family took her home.
Since then she’s had eight surgeries to reconstruct her eyes, nose and mouth as well as stimulate her motor functions, most recently at Shriner’s Hospital in Texas, USA.
Mr Marchioli, 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.’
But despite their struggles and her uncertain future, her father and mother Jocilene, 43, say they are grateful.
‘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 Mr Marchioli.
Among Vitória problems were her nose not forming, an obscured mouth, damaged eyes with her left one protruding from its socket and the other covered by a mass of tissue.
Despite the family’s best efforts to fix the problems through six years of surgeries, they regularly receive nasty comments about their daughter’s appearance.
Mr Marchioli 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.’
Vitória’s survival is all thanks to her family’s care which has involved round-the-clock efforts.
At times the family, would wake-up every three-hours to feed her nutrients through a tube pushed down her throat into her stomach.
As well as regularly checking on her to ensure she’s not choking or putting herself in harm’s way.
Mr Marchioli 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.’