A ‘new horizon’ for rare condition
Brazilian family gets financial, emotional support for daughter at Shriners in Galveston
GALVESTON — As soon as Vitoria Marchioli was born, doctors in her town in Brazil told her parents that their tiny daughter had only hours to live.
For the first two days of her life, she went hungry because doctors decided there was no use feeding an infant who would soon perish. Rolando Marchioli, 39, and his wife, Jocilene, 43, were told to begin making funeral plans.
Vitoria was born with a rare condition, Treacher Collins syndrome, that affects the development of bones and other tissues of the face and caused such severe deformities that she could be fed only through a tube threaded from her mouth to her stomach. Her left eye protruded from its socket and her right eye was obscured by a large lump of tissue. She had no nose, forcing her to breathe through her mouth.
Eight years later, she is still alive, and surgery at Shriners Hospital for Children in Galveston is making life easier for the girl and her parents. The family arrived in Galveston on Jan. 19 and is staying at the Ronald McDonald House in Galveston, which provides housing for families of children being treated at Shriners and the University of Texas Medical Branch.
Shriners paid for their airline tickets and for the surgery, according to the Marchiolis, but they are struggling to keep up with the expense of Vitoria’s day-to-day care. Shriners Galveston failed to respond to repeated requests for comment.
Vitoria was born in Barda de Sao Francisco, a town of about 40,000 some 90 miles from Brazil’s Atlantic coast and approximately 450 miles north of Rio de Janeiro.
Shaken by their daughter’s birth defects and the grim prognosis, they sought help from a larger hospital 160 miles away in Vitoria, capital of Espirito Santo state. Doctors there told them to return home and wait for Vitoria’s death.
Rolando Marchioli was working as a contract chauffeur and Jocilene as an accountant. They already had two daughters: Debora, now 16, and Heloise, now 15.
“We decided to invest as
much money as possible to keep the girl alive,” Rolando Marchioli, speaking through a translator, said in his native Portuguese.
For a year, they woke up every morning not knowing whether their infant would still be alive. Every three hours, they inserted a tube through her mouth and into her stomach and injected a specially prepared concoction with all the necessary nutrients.
They watched their daughter constantly to make sure she did not injure her protruding eye by bumping it with her hands or that her mouth wasn’t blocked by a pillow or some other obstruction, cutting off her only airway. Every feeding was fraught with worry; a wrong move could push the feeding tube into her lungs and drown her in milk.
‘Never gave up’
Jocilene Marchioli cared for Vitoria during the four months of paid maternity leave allowed under Brazilian law; then, the Marchiolis hired a nurse to care for the children while they worked. Eventually, they decided it would be cheaper for Rolando to quit his job, which was intermittent, and rely on Jocilene’s steady and higher-paying accounting job.
Their older daughters pitched in to help when they weren’t in school.
“They help a lot; they love a lot,” Jocilene said.
After a year, they traveled more than 600 miles southwest to a hospital in Riberao Preto for an operation to remove the tissue obscuring Vitoria’s right eye and also to make it easier to insert the feeding tube. After three operations, her left eye was recessed into its socket.
“They never gave up,” said Kleber Siqueira, 67, of Houston, who interpreted for the Marchiolis.
In 2013, the couple received a startling phone call from Dr. Leandro Cunha, a physician who had treated Vitoria. Cunha had contacted Shriners and arranged for Vitoria to be seen by doctors in Galveston.
“We were very happy,” Jocilene said. “This was like a new horizon for our family.”
The couple packed up Vitoria and drove 160 miles to the state capital to board a plane for Rio de Janeiro and then Houston.
In Galveston, they met Dr. Ted Huang, who has since died. Huang performed an operation that allowed them to feed Victoria directly through her stomach, removing the danger of an accidental insertion of a feeding tube into her lungs. The Marchiolis were relieved to hear Huang tell them, “I will treat this little girl like she was my granddaughter,” Jocilene said.
Huang envisioned a series of treatments that eventually would end in an operation that would allow Victoria to drink through a straw.
The Marchiolis in 2013 made two trips to Galveston and ever since have returned once a year. They have been supported emotionally and financially on each trip by members of Houston’s Brazilian com-
munity, which Siqueira estimated at between 5,000 and 10,000. Local Brazilians visit the Marchiolis, take them on outings, provide them with diapers and cash and help them buy the expensive milk concoction that keeps Vitoria alive. The Marchiolis are set to move out of Ronald McDonald House on Sunday and spend their last week in Texas in Houston with two Brazilian families.
Struggling to cover costs
This is the first year they have seen a doctor other than Huang. The new doctor evaluated Vitoria and told the Marchiolis to return to Brazil and every six months send reports on the girl’s medical condition. In less than two years, when conditions improve, he will perform surgery to allow Vitoria to use a straw to eat.
The treatment provided by Shriners has had a dramatic effect, the Marchiolis said. The couple’s lives revolve around their daughter, so any improvement in her life is an improvement in their own.
“This treatment makes all the difference in our lives,” Rolando said.
Despite the assistance from Shriners, the Marchiolis struggle every day to meet the financial burden to care for their daughter. Her special formula is expensive in Brazil, and Jocilene’s salary does not cover the cost, they said.
Members of the Houston Brazilian community have started a gofundme page that has raised $3,880 over the last 19 months, far short of the $20,000 goal. Siqueira said members of the Brazilian community also are working on a web page they hope to put up soon.