At Kennedy Airport, my brother and his wife had left me in a matter of seconds hopeless and with a broken heart. He stopped me from hugging him by putting his hand on my chest and with great anger he asked me: “What have you done? Why did you come?” He also told me, “You are blind, the blind do not get anywhere. You are a lost cause, neither here nor in China will the doctors be able to do anything for you. Go home! I’ll pay for the difference in the cost of the ticket, go home!” He wanted me to leave even if it meant my death. At that moment, he and his wife left. They left me alone sitting on a bench at the airport crying in pain, disappointed, depressed, hurt and in great fear not knowing what to do. It was hard for me to believe that my own brother was ashamed of me because of my skin condition. In addition to my blindness, I was in a strange country where I did not speak the language. The pain in my being was heartbreaking, at that moment I felt that I was dying and my nightmare was to know that my own brother was my executioner! Today I can say that God’s grace has allowed me to forgive my brother and all those who have hurt me. “If we forgive men their offenses, our heavenly father will forgive us also; but if we do not forgive men their offenses, neither will our father forgive us our offenses.” (Matthew 6:14 – 15).
After more than half an hour had passed, I heard my brother and his wife approach me. Maritza, his wife, had convinced him that he couldn’t just let me sit there. I soon realized that I was not dressed appropriately for the weather, as I was not wearing a coat. At that point my sister-in-law kindly offered me hers, but my brother quickly interfered and said, “No, no, let her freeze, maybe that way she will return to the Dominican Republic!” In the end, after much pleading and beseeching, they took me with them to their home in southeastern Connecticut, where I stayed for a year suffering the most horrendous humiliations from them. The truth is that during that year, living with them was very difficult for me. But thank God for the help of the wonderful Maysonet family, Adela, Francisco, Windy and Nanette, I began to make progress.
They helped me get medical assistance and were also very emotionally supportive. My sister-in-law’s cousin Maritza was very kind and attentive to me. She being aware of the conditions in which I was living, invited me to live with her. But despite her good heart and good wishes for me, due to drug problems in the house, my health was affected and I had to leave in a hurry. Since there was no other place available to me, I ended up living in a place for people with emotional problems and mental disabilities. There I was physically attacked by an office employee who tried to rape me and almost killed me. I had to go to the New London court to file charges against him. Thank goodness that trial was successfully carried out in my favor!
Despite all the pain and suffering that I have had to face throughout my existence, I have not allowed Xeroderma Pigmentosum skin disease to become an obstacle in my life. I live cheerful, content, happy and full of life! I have overcome many challenges. I have achieved goals that many thought would be impossible to achieve, such as coming to the United States alone. I also learned to write and speak the English language fluently, obtain American Citizenship, and learn to use the computer with a special program called Jaws. This program reads everything on the monitor with a synthetic voice. And despite my visual impairment, I live independently taking care of myself and taking care of everything in my apartment. But the most significant thing for me has been completing my High School Diploma which was one of my fondest dreams!
Hadley School for the Blind, which operates through correspondence throughout the world, selected 615 of the most prominent students of whom I was awarded the most outstanding student. In February 2005 I was presented with a plaque via a special telephone ceremony. The delight in my being was indescribable. Happiness flowed through my heart when I received such a beautiful plaque and such a beautiful certificate! Realizing this dream was truly a great honor for me! My graduation ceremony has been posted on the Hadley school website www.hadley-school.org
Among other recognitions received are the following:
- Courage Award from the Hispanic Community Center (1993)
- Certificate of Appreciation for Outstanding Volunteer Service at the Hamilton Park Apartment Complex (1995)
- Commission Tribute to the Hispanic Woman (2014).
Another one of my dreams is to be able to help people with XP who struggle with what appears to be a mountain of obstacles. Doctors do not understand how I have survived so many years of sun exposure and radiation treatments. It is a great blessing for me to have come to the United States. Here I have not only received help from the best doctors in the medical field, but I have also shared and received help from Xeroderma Pigmentosum support groups. And although it has been a privilege for me to have found these groups, I was very sorry to know that their information about XP disease reaches only the English-speaking population. There are other support groups for the disease in many others lands throughout the world, but there are no support groups for families affected by Xeroderma Pigmentosum in Latin American countries. This is one of the reasons why I have been motivated to create the non-profit charitable organization: XP Grupo Luz de Esperanza. I wanted to bring information about XP to our Latino people and many other cultures to be able to help many with my condition. Our organization is the first to meet the needs and establish resources for many Latin American families affected by this severe and complex disease.
After having fought for several years to incorporate this foundation, thanks to God, the XP Grupo Luz de Esperanza organization is a dream come true! Now I hope that I can get the support and help for all my Latino people and many other cultures for this beautiful charitable cause. I hope that our organization can help many to better cope with this disease and thus survive. Due to lack of information and proper treatment, many around the world are dying unnecessarily from this rare skin condition.
I hope that through my faith, knowledge and the experiences I have lived with Xeroderma Pigmentosum, I can bring hope and confidence to many families affected by this rare disease. I want to provide bravery and courage to those who feel hopeless and who are afraid to try again after several failures.
God chooses his best warriors to fight the greatest battles because He knows that they will be victorious! Without a doubt I am a fighter WARRIOR of God. To have endured so much pain, rejection and the worst humiliations, it is necessary to have been born with the vestment of God’s breastplate on. The willpower that I carry comes from God who fights my battles!
Although my daily life seems to be like a battlefield, I wake up each day with the best smile and thanking my God for the privilege of being alive!
May God bless you immensely!