The Story of Fatima Perez

An Example of the fight against illness and harsh adversities

I am a native of the Dominican Republic and although I love my land very much, I am very proud to have become an American citizen.  I live my life with extreme difficulties.  At the age of 20 I became blind due to Xeroderma Pigmentosum (XP), a rare genetic inherited skin disease caused by a defect in the body’s ability to repair DNA cells damaged by ultraviolet rays and some artificial lights.

My daily battle with Xeroderma Pigmentosum has helped me understand how precious life is and that I must live every day to the fullest! Although it is sometimes frustrating to live with XP, it is possibly the greatest thing about me because it has made me the warrior and fighter that I am.  Living with XP could have negatively altered my decisions in life, but on the contrary, it has made me much stronger, enabling me to continue understanding my condition and thus be able to find solutions to survive the ravages of this severe disease. Although I constantly have to face many adversities alone, I have a very positive attitude and I love life!

Due to this illness, I live in an apartment with low light, the windows are tinted and constantly covered with thick curtains.  There is no type of fabric that completely protects people suffering from Xeroderma Pigmentosum from the sun’s ultraviolet rays or any artificial light. But despite living with this severe disease, “I can do all the things in Christ who strengthen me.” (Philippians 4:13).

People with Xeroderma Pigmentosum should not go outside during the day. But many times it is necessary since stores, medical offices and banks operate during the day. Before going outside I apply a powerful sunscreen, wear regular clothing and then cover myself with a long jacket made of two layers of thick fabric.  I also wear dark sunglasses with coverage on both sides, I protect my head with a hat made of sun protection fabric, and lastly I put on gloves to protect my hands.  And even though this outfit is suffocating and weighs around 5 pounds, it is necessary to put it on every time I go out, no matter how hot the weather is.

 

Can you imagine life without being able to see or enjoy the sunlight?  Well, that is the reality with which I and others with my condition around the world have had to live, especially in our Latin American countries.

When I was 4 years old, an oncologist ignorant about what Xeroderma Pigmentosum was, treated me for a tumor on my left shoulder, giving me about 40 radiation sessions, worsening my condition each time. Those radiation treatments caused my skin to be severely burned and so thin that my veins and arteries could easily be seen.  My blindness was caused by exposing my corneas to the sun’s ultraviolet rays and the radiation treatments. I still have my left eye intact, but due to examinations with UV-emitting halogen lights, I have lost all perception of light.  My right eye was removed in 1984 in the Dominican Republic due to the damage caused by these disastrous treatments. It still hurts to remember the terrible and utter ignorance of the medical doctors in treating my severe illness. Over the years, my skin has suffered so much damage from the sun that doctors often have to perform surgery to remove cancerous skin from my body. People with XP do not tolerate ultraviolet light as well, as it irreversibly damages our DNA and this results in skin cancer.

In 1998 I attended a camp where I learned for the first time about my illness that affected me so emotionally. At last, I was finally able to understand why I constantly had my cheeks ulcerated on my face and various keratosis on my arms and legs. My blindness was caused by exposing my corneas to ultraviolet rays from the sun and radiation treatments that I mistakenly received at an oncology institute while living in the Dominican Republic.

When I was 4 years old, an oncologist ignorant about what Xeroderma Pigmentosum was, treated me for a tumor on my left shoulder, giving me about 40 radiation sessions, worsening my condition each time. Those radiation treatments caused my skin to be severely burned and so thin that my veins and arteries could easily be seen.  My blindness was caused by exposing my corneas to the sun’s ultraviolet rays and the radiation treatments. I still have my left eye intact, but due to examinations with UV-emitting halogen lights, I have lost all perception of light.  My right eye was removed in 1984 in the Dominican Republic due to the damage caused by these disastrous treatments. It still hurts to remember the terrible and utter ignorance of the medical doctors in treating my severe illness. Over the years, my skin has suffered so much damage from the sun that doctors often have to perform surgery to remove cancerous skin from my body. People with XP do not tolerate ultraviolet light as well, as it irreversibly damages our DNA and this results in skin cancer.

In 1998 I attended a camp where I learned for the first time about my illness that affected me so emotionally. At last, I was finally able to understand why I constantly had my cheeks ulcerated on my face and various keratosis on my arms and legs. My blindness was caused by exposing my corneas to ultraviolet rays from the sun and radiation treatments that I mistakenly received at an oncology institute while living in the Dominican Republic.

I have been through many struggles in my life. When I lived in the Dominican Republic, I was rejected by society because of my physical appearance. Even an ophthalmologist, where my father used to take me as a child, wanted to kill me with an overdose of anesthesia just to get rid of me. She said that people who suffer from such a terrible disease (Xeroderma Pigmentosum), would be better off to die so that they stop suffering. She told my family that I would die soon from cancer in my right eye, of which she had no proof because she never performed a biopsy to verify that diagnosis.  In their ignorance, my brother-in-law and my father were convinced of what she said and built my coffin. I found out about this 22 years later when I returned to visit the Dominican Republic in 2006. I thank my God immensely that they did not have to use that coffin for me.  But still, at that time they decided to keep the coffin for several months, waiting for my death.  Ha, ha, ha, with joy I smile, full of great happiness and I thank my Almighty God because I am still alive. And I am very convinced that God has left me on this earth to fulfill a special mission!

In my battle to survive this severe illness, my family has never offered me physical or emotional support. Not even the doctors could help me with my medical needs. My only hope for survival was to leave my country and come to the United States on a medical visa. I had to apply five times before it was approved. And against incredible obstacles I dared to take a plane alone to come to the United States. Every step was a challenge, I had to beg and borrow money for the trip. I had to make arrangements for transportation via car, bus and plane to leave my country. Also, I traveled alone without knowing the English language. And upon arriving in Florida, Samuel Pagán, the pastor of a Christian church, who did not know me personally, came to get me at the airport. He and his family were very kind to me and for the five days I was in Miami, they met all my needs. Then they helped me with the trip to New York where I was going to meet with my brother Miguel who was residing in Connecticut.

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!

“On a sunny day or even a cloudy day, Fatima takes care of her errands wearing special protective clothing.
Sunglasses and her blue coat, hood, scarf, and gloves are all made of ultraviolet blocking materials. She
says that she wishes she could turn the sun off with a finger when she goes out.”

The Testimony of Fatima Perez

Thank you very much to all for coming to share with me in this celebration of my fifty years of life.  For me this is more than a celebration for my half century of life on this earth, it is a testimony of gratitude to my God the Almighty!  To me this feast is a great gift of God!  And I feel very blessed to be able to enjoy this moment because the joy I feel inside of me is huge!  Can you imagine how I feel 30 years after my coffin was built?  And just to be here alife, on a day like today celebrating my 50th birthday, is truly a privilege for me.  I thank God with all my being for the miracle of my life!

If it were not for the mercy of God, 30 years ago these little bones would have already turned to ashes!  But God had a plan for my life.  I’m still here to testify how God by His great power works in our lives!  God does not care how you’re born, your physical disability or condition.  Each of us has a purpose on this earth, and as long as our God entrusted mission is not accomplished, no door can be shut, nor medical diagnostic can tell you when the day of your death will be!  Our destiny is not determined by the circumstances or any doctor.  If God has given you life, if you’re here, it is not by chance.  It is because God has a plan for your life, and your destiny is determined by God alone!

I think many of us are here on this earth to be witnesses of the wonders that our Lord Jesus Christ continues doing!  And I can tell everyone present here that I am a witness of those wonders because I am a living miracle of His great power!  Many of you know that people who suffer from Xeroderma Pigmentosum cannot expose themselves to the sun’s ultraviolet rays not even for a second.  And if God has allowed me to survive the deadly ultraviolet rays, to also survive more than 40 radiation treatments, and did not allow this little body to be put into that coffin that was built for me thirty years ago, then without a doubt God left me here so that I can fulfill the mission of helping other people with my condition and thus be able to bring a light of hope alleviating their pain a little.

When I speak of dreaming, I am calling the things that are not possible as though they were possible!  I know that what I dream of requires effort, sacrifice, and often to rise above the voices that told me, you’re crazy and that you will never achieve it.  But I new that by focusing intensely and objectively on my goals, I can break the negative and overcome any barrier that stands in the way.  No matter how dejected we feel, you know, with the power of God our souls become determined to be invincible, and even pain becomes an ally for our victory and with faith we shall win!

 

I feel victorious because God has delivered me from death on many occasions.  I believe that God helped lead me to my mission on this earth.  I believe that my purpose is to incorporate and build

XP Grupo Luz de Esperanza (XP Light of Hope Group).  I hope in God that through this organization, we can have medical conferences around the US and in our Latin American countries, trusting in God that one day dermatologist can better educate themselves about the disease so that they can offer adequate treatment and proper care to people with Xeroderma Pigmentosum.  Our goal is to help those affected with XP obtain the most essential items for a better quality of life.  It is important to protect children and adults from the sun’s ultraviolet rays and to avoid some artificial lights.  We plan night camps so children with XP can play and enjoy life as any other human being can do.

The reports about the Children of the Night in Yulmacap, Guatemala have said that these people do not have medicines to ease their pain.  My heart was deeply saddened when I heard the reporter say that some of these children hope to improve but many others live with a death wish.  Many times, I felt like them because during my childhood and adolescence I often existed without medical help and I had no hope of improving.  My will to live was being extinguished.  Nonetheless, God had a plan for me.  He filled me with bravery and courage, and this strengthened my faith.  With much perseverance, I was helped to get up from despair and this has allowed me to live for fifty years!

These fifty years taught me to be persistent.  These years filled my heart with happy memories, and other memories that still make me cry.  I found the courage to leap into the dark in the face of the challenges that intimidated me the most.  For fifty years, I enjoyed my wonderful parents who, even with their own limitations, always gave me the best they could.  It has been fifty years of learning during which I’ve carried a heavy burden and endured humiliation, rejection, and scorn.  Some days during these fifty years, there were times of crying desperately but there were also times for laughing.  Sustained by my faith, I have managed to get up victoriously after every fall!

I thank my God for my fifty years of life and I ask my dear God, the Almighty, to continue to give me life.  These fifty years have been a constant struggle for survival, but now I have many more dreams to achieve, many places to visit, many people to embrace etc.

Although ever since I was born, life has beaten me with rods.  But I have learned to be resilient. From each of those rods, I have built my log cabin where, thanks to my Almighty God, I live happily because I’m still able to breath!

My message is meant to give hope to all parents who have children diagnosed with Xeroderma Pigmentosum.  Protect your children from the sun’s ultraviolet rays and artificial lights, and maintain rigorous follow up with a dermatologist and your children can live for 50 years or even longer!