Vitória Marchioli, from Barra de Sao Francisco, Brazil has the genetic disorder called Treacher Collins Syndrome that prevented 40 of her facial bones from developing correctly.
She has to suffer from the displacement of eyes, mouth and nose ever since she was a baby. Due to this rare case, doctors doubted she would live any longer. They even refused to feed her, told her family to just go home and wait for their daughter to die and prepare themselves for her funeral.
But as God’s plans are greater than ours, the baby continues to survive as she reached her ninth birthday.
Her father, Ronaldo, 39, mentioned “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.”
It is believed that Treacher Collins Syndrome affects just one in 50,000 people.
Two days after she was born, she was transferred to the specialist unit where her condition was identified and was taken back to her home a week later.
Since then she has faced eight surgeries to rebuild her eyes, nose and mouth as well as to 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.
“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.”
Her mother, Jocilene, 43, said they are always grateful despite the difficulties they have to face in raising their one-of-a-kind child.
Even when they have tried their very best to fix the problems by undergoing surgeries for six years, they always received cruel comments regarding their daughter’s appearance.
Mr. Marchioli said “We have been verbally abused and rejected by the public because of the appareance of our daughter.
“Even our other daughters have told us that the children at school verbally abuse them for the appearance of Victoria.”
Frustrated with all the nasty comments they received, Mr. Marchioli hopes that people are no longer prejudice towards other people’s appearance, skin colour, race, religion and many more.
Vitória’s parents are now doing a fundraising to support her medical costs. Let’s all hope for the best for Vitória and her family.
WHAT IS TREACHER COLLINS SYNDROME?
- Treacher Collins Syndrome affects bones and other tissues development in the face.
- Most sufferers suffer from undeveloped facial bones, often occur at the cheekbones, a very small jaw and chin.
- In severe cases, underdevelopment of the facial bones may cause the blockage of infant’s respiratory system that can threaten life.
- Some affected sufferers may lose their visual ability.
- Hearing loss may also occur in around half of all sufferers.
- It is often caused by the defects of three small bones in the middle ear, which transmit sound, or by the underdevelopment of the ear canal.
- This condition affects one in 50,000 people and is caused by mutations of a specific gene.