Last night, the Discovery Channel showed a documentary on 13-year-old Marlie Casseus of Haiti. Marlie has a disease called Polyostotic Fibrous Dysplasia, which caused the bones of her face to grow to enormous size.
Polyostotic Fibrous Dysplasia is a disease in which the bones which are affected grow uncontrollably, and in an uneven pattern, causing deformity and pain. Marlie’s situation was the worst case doctors had ever seen with this disease, and it was threatening her life because she couldn’t eat, and she couldn’t breathe. Furthermore, it was blinding her.
In her native Haiti, there was not only no medical treatment for it, no one even knew what it was. Many believed she was a “monster”, or that she had come under a Voodoo spell. When two Haitian nurses came to see her when Marlie’s father contacted them after having seen them on a news program, she had hidden herself away and was just waiting to die. Having never seen anything quite like this disease, even the nurses were afraid of her, and one of them admits that she thought, “What is this? Is this a human?”
As a young child, Marlie looked perfectly normal. However, as she grew, her face became increasingly deformed.
Here is Marlie at age three: 
And here is Marlie at age 13:
The initial surgery, to debulk the bones in Marlie’s face, took 17 hours to complete and cost $95,000 even at charity rates. The cost was paid entirely by donations from around the world, which were raised in only about a month. In the meantime, she had been flown to Miami and was being treated at Jackson Children’s Hospital. She was immediately given a tracheotomy, so she could breathe, and was also given a feeding tube to reverse her malnutrition. Without those emergency interventions, Marlie would have died before she received the surgery.
The tumor itself weighed 16 pounds, and was so large that it was heavier than her entire head. As a result, she had to hold her head up manually, with her hands. In order to perform the surgery, doctors created a 3D rendering of Marlie’s entire head, based on X-rays, MRIs, etc. During the surgery, doctors created an artificial nose, and removed the bone overgrowth. A second surgery was performed to remove the overgrown bone in her lower jaw; doctors ended up removing her lower jaw altogether, and replacing it with a titanium jaw.
Here is what Marlie looks like today, after doctors completed the four incredibly complex surgeries to remove the damage caused by the disease, and gave her a new face:
While Marlie will never look “normal” and will always carry the scars of this horrible disease, according to reports she is now a healthy, happy teenager.
Marlie’s surgery, which literally both saved her life and gave her a life she otherwise would never have had, was made possible by the International Kids Foundation. Please visit their website and, if possible, make a donation to the wonderful work they are doing to help children around the world.
i love this ducumetry about Marlie is was an inspring thing for me and others to see this teenager just like me share something that is so different about us and to be able to connect she is a fighter and a survival. i wish nothing but the best for Marlie and her family .
Hi Marlie, I seen the tv programme and wish you all the best – here walk I, by the grace of God.
A couple of years ago I donated money to International Kids Fund on behalf of Marlie, and just a few days ago I got a solicitation from them, saying that Marlie’s tumor had returned and she needed another surgery. When I went to their website, it isn’t updated at all, and says nothing about her current condition. I was under the impression that her growth could not come back. Now I am wondering if International Kids Fund is a scam, or whether there is an organization out there impersonating IKF in order to take people’s money. If anyone knows anything about this, please post here.
Hi, Tehiya. Sorry I am just now replying, but I have been mostly offline for months due to serious family illness issues.
First, let me say that I am impressed that you contributed to Marlie’s medical needs. That speaks volumes about you, and I am so pleased and honored to have someone with your kindness toward complete strangers on this blog.
It is my impression that Marlie’s tumor can indeed return, since it is essentially an overgrowth of bone, so it’s possible that she may need another surgery. It is also possible, as you pointed out, that someone is impersonating International Kids Fund since their website says nothing about it.
I think if I were you, I would look up their phone number and call them directly, or else contact them through their site, to make sure you are actually in contact with IKF and not an impersonator. If someone is impersonating them, they definitely need to know so they can take steps to stop it, and bring the frauds to justice.
Please let us know what you discover. I’m sure if Marlie needs additional surgery, others on this blog would also like to contribute to her care as well. She is an adorable little girl, and I would like to see her get whatever she needs to live a happy life, after all the suffering she has endured.
Again, apologies for the late response.
Best,
ENM