More than 10 years after her first surgery at Jackson Memorial Hospital, Marlie Casseus is still grateful.
“I’m so happy to be able to be back here,” the 23-year-old resident of Port-au-Prince, Haiti, said Thursday, speaking at the same hospital where doctors saved her life in 2005. That first surgery — to remove a 16-pound tumor from Casseus’ face — made the then-teenager internationally famous. Her struggles with a rare form of polyostotic fibrous dysplasia — a condition that causes bones to swell and become jelly-like — attracted widespread media attention. Casseus was featured on the Discovery Channel. She has her own Wikipedia page.
Casseus also has dreams of becoming a photographer, she said during a press conference Thursday. Through an interpreter, she told the gathered reporters, “I would love to be one of you.”
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Casseus traveled to Miami this week with a group of about 150 Haitian nurses, in celebration of National Nurses Week.
The life-saving care that Casseus received at Jackson came through Jackson Health Foundation’s International Kids Fund and a Haitian charity, Good Samaritan for a Better Life. Doctors at Jackson donated their time, and the Jackson Health Foundation received more than $100,000 in donations to support Casseus.
All told, the young woman has had about 10 surgeries at Jackson. The first of those surgeries, in 2005, lasted nearly 16 hours.
“When this child came to us, she was in very bad condition, she couldn’t eat, she couldn’t breathe,” said Niurka Del Valle, senior director of major gifts at the Jackson Health Foundation. Del Valle said Casseus has gone through an amazing “transformation” that improved both her health and her confidence.
“Right now, she’s able to live a normal life,” Del Valle said. “She’s on Facebook. She has friends. She has a better outlook on life.”
At one point in her talk with reporters, Casseus became teary-eyed. She said they were tears of joy.
“I’m overwhelmed,” she said.
Although the treatment Casseus received at Jackson saved her life, the road to recovery hasn’t always been easy. Because of the extensive damage caused by the original tumor, Casseus had to re-learn how to speak and swallow.
There have also been follow-up surgeries — in 2014, for example, she underwent several procedures to open up a closed nasal passage, and to replace two nasal tubes. She spent months in the hospital. In the future, there may be additional cosmetic surgeries to further repair her face.
At home in Haiti, Casseus hasn’t attended school since the catastrophic earthquake of 2010, which destroyed her special-needs school.
But in dealing with those obstacles, Casseus now has an extensive support network of doctors, including her older sister, Stellcie, who was inspired to become a physician because of Casseus’ condition.
Ginette Eugene, a nurse who co-founded Good Samaritan for a Better Life, the Haitian charity, said Casseus’ life is far different from where it was before the surgeries. Before 2005, she said, Casseus’ condition was simply getting progressively worse, and her family had no ability to help her.
“Marlie was left in her room to die, because there was no hope, no physician could save her life,” Eugene said.