Christophe Ramsamy challenges all forecasts. He is one of the two Mauritians to suffer from a rare and incurable genetic disease, the Xeroderma Pigmentosum (XP), characterized by an absence of melanin, which makes his skin and his eyes extremely sensitive to ultraviolet rays and he must imperatively protect himself. While the life expectancy of “children of the moon”, as they are called XP patients, is about 15 years, Christophe has exceeded this stage. He was able to complete his secondary and university educational career and even work. This fighter has just risen from a stroke that had made him hemiplegic. Except that he can no longer work because his sight drops and he needs a corneal transplant. Expensive operation that is not practiced in Mauritius and that Ramsamy cannot afford.
Christophe whom we have been following for ten years and who is now 37 years old, knows that he went to the verge of death, on July 11, 2024, when he ruled an aneurysm. It was two days after his father’s birthday. Her parents-Nathalie, her mother, is a childcare worker and Tony, her father, is a retired chief-went to Port-Louis and their son was alone at home. It was his friend Bilkiss, with whom he had an appointment, who called him and who, worried about his silence, warned his parents. Nathalie and Tony then returned to the fourth speed at home and found it on the ground, in a semi-commatian state, the jaw tight and foaming. “We were afraid to lose it”says Nathalie. At that time, their only idea was to transport him urgently to the hospital and for once, they lowered their guard, not thinking of getting it as each time Christophe must get out of day so that UV rays do not hurt him. Tony only knows that he led like a madman to join the SSRN hospital where Christophe was immediately taken care of.
The diagnosis was quick: he had made a stroke and Christophe was hemiplegic. Placed in the intensive care unit (ICU), it was nourished by tube. The life of Nathalie and Tony only turned around the hospital visits. “We no longer lived. We commissioned between the hospital and the house. We didn’t do anything apart from praying. ”
The hospital service being what it is, the Ramsamy have sometimes been forced to pushing the mouths so that the nurses pay the necessary attention to their son. “One day, Christophe had an episode of hopes endlessly. It was not a simple hiccups but big tremors to the point of shaking it on the bed. When we told the nurse to come and see him, she replied that the doctor would pass later. Tony had to braille so that the practitioner moves and comes to take care of Christophe. ” Another example of indifference, the air conditioner in the ICU gave directly to Christophe’s bed and he took cold. He was feverish and shivered but the staff refused to turn off at times. Again, the Ramsamy had to insist greenly. “The best thing to do so that the staff takes care of the patient as it should be to go morning and evening to the hospital and not miss any visit.”
Raise his parents’ morale
At one point, as Christophe was only fed by tube in the nose, the doctor who followed him announced to his parents that it had to be operated on to put a probe in the stomach so that the nutrients are directly administered to him. “The doctor told us that he couldn’t swallow and that if it continued, he was going to die. Hence his proposal to operate Christophe to put a probe. We said we were going to think “declare Tony and Nathalie. Christophe, who had heard everything, snatched the nasal tube the next day and tried to eat. “What was given to me in the tube was LaSoup Delo. I told myself that I had to kick in the anthill and I torn off the nasal tube ”he said.
Feeling the sadness and discouragement of his parents, to cheer them up, Christophe who loves word games, launched little jokes when the hours of visit were over and his parents had to return. “He made us laugh by telling us the Lll Cu or the Later. But it also sometimes happened that he was anxious. He then hugged me with his valid arm and said to me: Mom, I don’t want to die! ”
Christophe spent a month at the ICU and a week in the dining room and it was in a wheelchair that he left the care center, being unable to walk, despite the massages that his father gave him on each visit. To nursing staff, he did not fail to say: «ICU no more».
Then started for Christophe of the physiotherapy sessions twice a week at home. Then, the Ramsamy were directed to the Global Rainbow Foundation where Christophe was taken care of by the physiotherapist Ashwin. From the second visit, the practitioner told his parents that Christophe’s will is so strong that he would not need the wheelchair for a long time. And it was true. “And it was the same for the diaper episode he wore when leaving the hospital and which did not last either. He has a combative nature “says Nathalie.
Christophe took six months before recovering almost completely and regaining his mobility before. He admits to having been afraid of never being able to restart. But that was without counting his stubbornness to get there. However, he gets tired quickly and “Somnole all day”says his mother. “He needs a lot of rest”she adds.
Down vision
If before the stroke of Christophe, the Ramsamy regularly checked the blood pressure of their son since he was not doing physical exercises and led a fairly sedentary life, since his break in aneurysm, he must take a medicine for the head, another for his blood pressure and he had to make an electroencephalogram because he developed an episodic epilepsy.
Since he was better, Christophe bought himself a treadmill and every morning he walks for half an hour. His parents also monitor his diet. “He gave us a blue afraid”admits Nathalie. “Big blue”underlines Tony laughing.
What is unchanged in the young man is his beautiful appetite. “Christophe has always been greedy and what he prefers to eat is pizza. Besides, for Father’s Day, her sister Elodie, her husband Nicholas and Christophe offered Tony a pizza oven. ”
Since 2001, the Ramsamy can no longer take Christophe to France to make his check-up for the Xeroderma Pigmentosum. “Until 2001, we took it every year in Paris, at Necker Hospital, where melanoma was removed to have them analyzed and verify that they are not carcinogenic. We also went to Villejuif hospital to have his eyes checked. But since then, we can no longer do so. ”
How is his vision? Nathalie explains that since 2019, Christophe’s vision has decreased drastically. Christophe declares that it is only on the computer that he can zoom, to see the colors, to reverse them, to grow the characters to write. “I can still use the computer.” But he no longer knows for how long.
In 2020, the Ramsamy took him to Dr. Khalil Fakim, ophthalmologist, who explained to him that his vision is deteriorating that the disease dries up his eyes, that there are limestone deposits on his cornea and that it is scarifying. “Dr. Fakim told me that there is a procedure to remedy it. We make an organic cornea grow in one of my teeth to verify that there will be no rejection and if it holds, it is grafted in the eye. Except that this intervention is not done in Mauritius. ” In India if. The Ramsamy have applied for a quote and the cost is too high for their meager income, rs 600, 000 Indian women, which is around 300, 000 Mauritians. Sum that they can never gather alone …
When Christophe was still working, he sometimes went out at night with friends to take a pot and for dinner. He also friendship with a young girl named Bilkiss, the same one who warned her parents, on July 11, 2024, that Christophe no longer replied to the phone. Bilkiss suffered from a congenital heart disease and when she was a child, she had been sent to South Africa to the good Sacim care to be made there. This year, she had left for India in order to be operated again, but the doctors had not found the necessary intervention. Except that one day, Bilkiss was taken of weakness and had to be hospitalized. She died a month ago. For Christophe, it was a shock. “Bilkiss was my Mam Cole, my soul mate.”
Does he fear death? “I sometimes think about it but I’m not afraid. After the stroke, I realized that I had come close to death and that without a divine intervention, I would not have been there before you to speak to you. This episode and the death of Bilkiss changed my prospects for life. I tell myself that I have to lead a healthier life. Before, I didn’t ask myself the question. “
The message he wants to transmit to people is “To enjoy life, to always go for it and never give up.”
Shaken by the death of Bilkiss, Christophe wrote what will become a book and which is called «Still with me – A dialogue beyond goodbye.» We were able to read a few pages of this imaginary dialogue between him and his deceased friend and at no time Christophe gave in the pathos. All we can say is that at the end of this reading, we had with a knotted throat and your eyes fogged …
