A LITTLE girl has defied extraordinary odds to reach her ninth birthday, after a rare condition meant she was born without a face.
Vitória Marchioli from Barra de São Francisco in Brazil, has Treacher Collins syndrome that stopped 40 of her facial bones from developing to leave her eyes, mouth and nose displaced.
Doctors doubted she would survive her first few hours of life, refused to feed her and advised her family to start making funeral arrangements.
After defying their predictions at two days old she was transferred to a specialist unit where her condition was identified and a week later she was released to her family’s care.
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
Ronaldo, Vitoria’s Dad
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.
Parents Ronaldo and Jocilene, 39 and 43, are continuing to fundraise for more treatment in the hope it will give her a better quality of life.
Earlier this month, she reached her ninth birthday baffling doctors who believe the only reason she is alive is due to her family’s thorough care and love.
Rolando, 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 Treacher Collins syndrome.
“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.
“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.
“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.
A RARE DISORDER THAT CAUSES FACIAL DEFECTS
Treacher Collins syndrome affects the development of bones and tissue in the face.
The signs and symptoms of the disorder vary greatly, ranging from almost unnoticeable to severe.
Most sufferers have underdeveloped facial bones, particularly the cheekbones.
Another typical sign is a very small jaw and chin.
Some born with the condition will also have a cleft palate, an opening in the roof of the mouth.
The underdeveloped facial bones can restrict a child’s airway, causing life-threatening respiratory problems.
The condition is rare, affecting one in every 50,000 people.
“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.”
Vitória was born with Treacher Collins syndrome an undergrowth disorder that affects one in 50,000 people and left her with numerous facial deformities.
Doctors believe Vitoria has survived so long, in part thanks to the love of her family Credit: Caters News AgencyAmong her 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 eight surgeries over six years, they regularly receive nasty comments about their daughter’s appearance.
Rolando 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.”
Doctors who told the family to go home and wait for their daughter to die, now can’t believe Vitória is still alive and attribute her survival to their love and care.
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.
Rolando 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.”
Source: https://www.thesun.co.uk/living/4363459/miracle-little-girl-born-without-a-face-defies-incredible-odds-to-survive-thanks-to-the-love-of-her-devoted-family/
