Fedia’s Story

Fedia and her Retinoblastoma 

We had just finished the hospital in Jimani, Dominican Republic, which is about 500 yards from Haiti. We have done many medical clinics there and at Fond Parisian right across the border in Haiti. In order to get to Haiti we had to cross the “no man’s land“. That was a place of Thieves, murders and markets selling a variety of goods illegally.

That particular day on the porch at Jimani our team was there, and before we went out to the clinics, we prayed together. There were about 20 of my dear friends there with me. Our prayer was that we would see “Jesus in the eyes of the poorest of the poor“ That is a quote from Mother Teresa. We then crossed the border and met Charlie LeMorzac, who was head of the Eden garden orphanage and Montrouis, Haiti. I’ve made arrangements to bring a bus to him via sea container. He was driving a Knox County school bus. We had already set up a clinic under the trees in Fond, Parisian in order to see the thousands of patients we were going to see that day. Charlie drove up in the Knox County school bus and he was holding what seemed to be a child in his arms. The face was covered by the blanket and he said,” I want to show you a child that needs help desperately”. So when he pull back the blanket. It was Fedia, who had bilateral retinoblastoma with was blind. Her eyes had maggots actually growing in her eyes. It took my breath away to see the suffering of this poor 3 year old girl. I took some pictures and tried to think of something we could do.

It was a particularly dangerous time in Haiti, where there was rioting and killing in Port au Prince and they had “Haitian Roadblocks “which were tires across the road to intimidate and rob fellow Haitians. The druglords and the gangs even tortured men and women with a “gas necklace“ which was a tire filled with gas lit, and the person head was severely burned often fatally. We went back to our hospital in Jimani , Dominican Republic, and we began to think about what we could do for Fedia. The other members of the group said that definitely we should not go back as the country was in revolution and chaos.Many Haitian’s felt that Voodoo curse had caused the tumor and had placed her blood on a red cross outside the pictured Voodoo Temple. I simply could not help myself to go back and I convinced Dr. Marc Pinard, who was a Haitian born American trained general surgeon who was my dear, dear friend. He lived in Jimani . He could see that I really wanted to go back but he was afraid as his parents had been murdered by baby Doc Duvall, who was a dictator in the 80s in Haiti. He vowed never to spend the night in Haiti again even though he frequently went to Haiti. Finally, he agreed and we took off on the journey to bring Fedia back to the Dominican Republic for surgery and perhaps chemotherapy if it could be arranged. As Marc and I were driving on Highway one through Port au  Prince there was a” tap tap”, which is a colorful type of taxi which in fact was a truck with a covering over it on it that often would seat 20 individuals packed nose to nose. I saw the tap tap and on the side of the” tap tap” it quoted Exodus 14:14 which said “the Lord will fight for you; you need only to be still“ as we left Port au Prince there was a very dangerous intersection between City Soleil, which is the worst slum which was crime riddled suburb of Port Prince. At that junction, I am completely certain that the Lord placed a tank and soldiers to protect us as we went back along highway one to Moutrous,Haiti.

We found Eden Garden orphanage and found Fedia. She was wearing completely straggled clothing and had a red bandanna over her eyes to keep the flies away from her eyes. It was so profoundly moving and so profoundly desperate that I had to put my sunglasses on to hide my weeping. We then took Fedia back to Dominican Republic. Normally this would take a visa and a passport, but whenever we uncovered Fedia’s eyes and head  people were profoundly moved and officials and policeman and border patrol individuals said just take her on without any papers. So we ended up taking her to Jimani then ultimately we took her to Port au Prince where we arranged for Dominican eye surgeons to remove both her eyes. Also made arrangements for chemotherapy for her retinoblastoma. The chemotherapy we used was similar to what children with retinoblastoma received in the US at Saint Judes Hospital. We were able to take her back to Haiti and we had a good friend who agreed to supply chemotherapy on a weekly basis to treat her retinoblastoma. She is well for a while, but then her chemotherapy was interrupted by a series of hurricanes that made the passage from Santo Domingo to Haiti impossible. During that period of time her tumors reoccurred. I was devastated by this, and I could not sleep until I did something about this situation.

Since we had said that we wanted to see “Jesus in the eyes of the poor“ I really felt compelled to go back to Montrouis and buy a new dress and baptize her and wash her feet as Jesus has done to his disciples and others. We accomplished this, and the images are as above. Ultimately, we decided to bring her to the United States. One of my dear friends, who is a physician agreed to accompany her. She did not need any papers. All was necessary to allow entry in the United States was to just show the child and her suffering. Everyone was moved to tears and showed extreme compassion.

My physician friend called me from Charlotte when they arrived there from Port au Prince. Francisco Noel, who was with Lydia said that her cancer ridden face had essentially fallen off. When I heard the news, I could not drive any further and ask my wife and Art Moore who was living with us at the time. Art was a professional football player for the New England Patriots. At any rate my wife started driving and I just lay down the backseat devastated. Ultimately we got radiation therapy at Thompson cancer survivor center. It did essentially no good. My wife and her mother took care of her continually and it was a thing of beauty to behold two mothers who were suffering. Ultimately, she was taken back to Haiti and she died there.

The story sounds extremely sad, but amazingly her death and those images so moved a billionaire in Huntsville, Alabama that he funded a Pediatric surgery center in Jimani and ultimately built a hospital and an orphanage, which were extremely beautiful. He also agreed to fund 400 Pediatric Heart Surgeon for $1.4 million. Some total as a result of just seeing the face of Fedia  we raised three to $4 million.

Trip Gallery

Fedia and the red bandanna that was covering her face so people would not see her retinoblastoma

Fedia getting baptized