Menina que nasceu sem rosto supera todas as expectativas e celebra o 9º ano de vida

de Merelyn Cerqueira 0

Vitória Marchioli, da Barra de São Francisco, no Espírito Santo, nasceu com uma condição chamada Síndrome de Treacher Collins, que interrompeu o crescimento de cerca de 40 ossos de sua face, deixando seus olhos e nariz completamente deslocados e uma aparência desfigurada.

À época, os médicos informaram os pais de que ela não sobreviveria muitas horas após o nascimento. No entanto, em agosto deste ano, desafiando todas as expectativas, ela completou seu nono ano de vida, de acordo com informações do jornal Metro.

PICS BY RONALDO MARCHIOLI / CATERS NEWS - (PICTURED: Vitoria as a baby, she has teacher collins syndrome meaning the bones in her face have not developed properly and she was born with a face) - A miracle girl has defied the odds to reach her ninth birthday thanks to her familys love after a rare condition meant she was BORN WITHOUT A FACE. Vitoria Marchioli from Barra de Sao 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 the familys care. Since then she has had eight surgeries to reconstruct her eyes, nose and mouth as well as stimulate her motor functions, most recently at Shriners 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 -Aug 13- she reached her ninth birthday baffling doctors who believe the only reason she is alive is due to her familys thorough care and love. - SEE CATERS COPY

Ao longo de seus nove anos, Vitória passou por uma série de operações de reconstrução facial, que visaram posicionar melhor seus olhos, nariz e boca, bem como outras feitas para estimular funções motoras.

A operação mais recente foi feita no Shriner’s Hospital, no Texas, EUA, graças a recursos angariados pelos pais, Ronaldo, de 39 anos, e Jocilene, 43, na esperança de que a menina consiga uma melhor qualidade de vida.

Recentemente, Vitória comemorou nove anos de vida, deixando muitos médicos maravilhados e desconcertados. “Ela não tinha expectativa de vida certa. Não sabemos por quanto tempo irá sobreviver. Não esperávamos que chegasse até o nono aniversário, mas somos gratos por ela ter conseguido”, disse Ronaldo.

PICS BY RONALDO MARCHIOLI / CATERS NEWS - (PICTURED: Vitoria has had over 40 surgeries to fix her skull - she has teacher collins syndrome meaning the bones in her face have not developed properly and she was born with a face) - A miracle girl has defied the odds to reach her ninth birthday thanks to her familys love after a rare condition meant she was BORN WITHOUT A FACE. Vitoria Marchioli from Barra de Sao 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 the familys care. Since then she has had eight surgeries to reconstruct her eyes, nose and mouth as well as stimulate her motor functions, most recently at Shriners 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 -Aug 13- she reached her ninth birthday baffling doctors who believe the only reason she is alive is due to her familys thorough care and love. - SEE CATERS COPY

“Os médicos não podem explicar como ela viveu tanto tempo, mas eles acreditam que nosso cuidado e o amor a mantiveram viva”, acrescentou. “Esperamos continuar a angariar fundos para dar a nossa filha uma melhor qualidade de vida e dar-lhe a melhor aparência possível. Nós a amamos e somos gratos por tê-la viva”.

Apesar dos esforços dos pais para manter a filha viva, eles ainda enfrentam comentários maldosos das pessoas que zombam da aparência da menina. “Nossas outras filhas nos contaram que as crianças na escola abusam verbalmente da aparência de Vitória”, disse Ronaldo.

PICS BY RONALDO MARCHIOLI / CATERS NEWS - (PICTURED: Vitoria has had over 40 surgeries to fix her skull - she has teacher collins syndrome meaning the bones in her face have not developed properly and she was born with a face) - A miracle girl has defied the odds to reach her ninth birthday thanks to her familys love after a rare condition meant she was BORN WITHOUT A FACE. Vitoria Marchioli from Barra de Sao 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 the familys care. Since then she has had eight surgeries to reconstruct her eyes, nose and mouth as well as stimulate her motor functions, most recently at Shriners 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 -Aug 13- she reached her ninth birthday baffling doctors who believe the only reason she is alive is due to her familys thorough care and love. - SEE CATERS COPY

“No futuro, esperamos que a humanidade tenha mais amor pelas pessoas, independente de sua aparência, cor da pele, raça, religião e muito mais”, acrescentou. 

De acordo com a Universidade de São Paulo, a Síndrome de Treacher Collins é um transtorno que afeta uma em cada 50 mil pessoas.

Ela prejudica o desenvolvimento craniofacial, provocando o achatamento dos ossos da face, queixo e da região das orelhas, malformadas ou ausentes, surdez parcial, fendas nas pálpebras e palato estreito ou fissurado. Em cerca de 90% dos casos, ela é causada por uma mutação no gene TCOF1, podendo ser transmitida de pais para filhos.

Fonte: Metro / USP Fotos: Reprodução / Metro

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