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.
Vitória Marchioli, from Brazil, was born with rare Treacher Collins syndrome
Her devoted parents Ronaldo and Jocilene, pictured here, were told by medics that she would not survive beyond a few hours
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.
The condition has meant 40 of the bones in her face have not formed properly
The girl’s family say their daughter is bullied over her appearance despite eight operations on her face
We don’t know how long she will survive
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.
Vitória’s father says he does not know how long she will survive and didn’t expect her to make it until her ninth birthday
The child needs round-the-clock care to keep her alive and ensure she’s not choking
‘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.
Her family are now fundraising to cover medical costs to give Vitória a better quality of life
WHAT IS TREACHER COLLINS SYNDROME
Treacher Collins syndrome affects the development of bones and other tissues in the face.
The signs and symptoms vary greatly, ranging from almost unnoticeable to the severe.
Most sufferers will have underdeveloped facial bones, most notably the cheekbones, and a very small jaw and chin.
Some people born with the condition are also born with a cleft palate.
In severe cases, underdevelopment of the facial bones may restrict an affected infant’s airway, causing potentially life-threatening respiratory problems.
People with TC often have eyes that slant downwards, sparse eyelashes, and notch in the lower eyelid, known as an eyelid coloboma.
Some affected individuals can lose their vision.
The syndrome is characterised by absent, small or unusually formed ears.
And hearing loss occurs in around half of all sufferers.
It is usually caused by defects of the three small bones in the middle ear, which transmit sound, or by the underdevelopment of the ear canal.
The condition affects one in 50,000 people and is caused by mutations of a specific gene.
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.’
Vitória’s parents are fundraising towards her medical costs. To donate to their cause visit here
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