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.
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.
Rolando, a contract chauffeur, said: “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. 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.”
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.
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