y name is Vivian Lorena Lopez. My husband is Jesus Alberto Lopez. We are the
parents of a beautiful child, Jesus Adrian Lopez. We are from Cartagena, Colombia.
When our son was born, the doctors told us our child was in perfect health. It was a joy
to know that our first child was healthy. Our son is now 17 months old and as the time
went by, our son developed freckles on his face and arms. His eyes were constantly red
and irritated. He kept scratching at his eyes. The general doctor told us the freckles were a
simple inheritance that runs in the family. She also said his eye condition was a very
small infection and she gave him a treatment in order to care for it. As time went on,
our child developed more freckles and his eyes showed no improvement. We took
him to a pediatric ophthalmologist. On January 29, 2018, our son was diagnosed with the
rare skin disease Xeroderma Pigmentosum. It was very sad and difficult for us when
our son was diagnosed with this devastating disease.
When I realized that my son could not be exposed to sunlight, I felt like removing my own skin and putting it on my son to help him! I couldn’t accept that my only son has been diagnosed with this rare and severe disease that prevents him from going out in the daylight and enjoying life!
Since the moment we received his diagnosis, my husband and I began our fight against this difficult disease that disables our child from living a normal life. We are doing everything possible to take care of our son. We keep him away from the ultraviolet rays of the sun as well as some artificial lights. We apply moisturizer creams and sunblock to his skin and eye drops to his eyes. It has not been easy for us to deal with our son’s illness. We do not have the necessary resources to purchase the special UV light protection clothing and other vital equipment. We contacted XP Grupo Luz de Esperanza and this organization has guided us on how to take care of our son. XP Grupo Luz de Esperanza has donated us a life-saving device to measure the ultraviolet rays of the sun. The help provided by Fatima Perez and XP Grupo Luz de Esperanza will give my son a better quality of life.
Struggling is constant with her illness. Another problem arose; the unavoidable sun exposure to her face caused a problem with her eyes. The doctor said that a cornea transplant should be done. I do not have much money because I am a single mother with no help from her father. I was not in a financial position to cover an approximate RD $130,000 expense. For several days, I knocked on doors looking for help and trying to raise money for the operation. I even asked for help at the office of the First Lady. I managed to get RD $78,000 which was deposited directly to the medical fund for Katherine’s operation. When enough money was collected, an operation was performed but the transplant was not successful.
The fight has become more and more difficult with my special girl. We used to leave home at five in the morning to go to the hospital and we did not return until five in the afternoon. All we would hear from the hospital staff was a repetitive, “Come back tomorrow, come back tomorrow so doctor such and such can see her.” We lost the battle and Katherine lost her sight! She did not get the treatment that her illness required.
When Katherine was 13 years old, another problem developed. This one was the most difficult and painful of experiences. A lesion appeared on her nose. It was treated with liquid nitrogen and she used to leave the medical center with a sore and inflamed face every time she got this treatment. After several treatment attempts, the plastic surgeon decided that he had to do another operation for her. It was removal of her nose! It was a drastic change and it was a very painful procedure. We have to accept it and move on.
Sometimes I fall apart but I know I must get up and move forward. I do not want to show weakness to my daughter so she won’t feel unsupported. Thanks to the love she receives from her mother, stepfather and two younger sisters, Katherine does feel love and affection! Thanks to God, I have the strength to take care of my daughter. The Dominican Republic is a tropical country where there is not much help for people with Xeroderma Pigmentosum. Life is very difficult for us here.