Stories

A Story of Triumph Over Adversity

By Ivan Escobar

By the time Ivan was born, in 1968, the Escobar family already had two boys with hemophilia. The first child had died in infancy as a result of head trauma. When Ivan came along, his family just continued to do the best they could for their family. His parents recruited relatives, friends, and even resorted to paying strangers to donate blood to the Red Cross, so that their boys could get the regular whole blood transfusions they needed. However, Ivan still had many barriers to overcome. First of all, he lived in El Salvador, a third world country, where even today it is hard to get top quality health care, not to mention the appropriate medications. Compounding this, he was born with severe hemophilia. Life went on for Ivan, his brother, and the rest of the family without many incidences until 1982, at which time Ivan vividly remembers a life-changing incident that had great impact on his family’s entire future. While Ivan’s parents were busy at work, Ivan had spent a good part of the afternoon riding on the handlebars of his 15-year-old brother’s 10-speed bike. Unfortunately, what became a carefree afternoon of fun for Ivan, became a nightmare for the rest of his family. Unbeknown to Ivan or his parents, was that his brother had injured his stomach, resulting in a stomach bleed. Not wanting to get in trouble or go to the emergency room, his brother did not tell anyone that he had injured himself. The next day, while Ivan got ready for school, his brother informed his mother that he had had a lot of discomfort and confessed that he had injured himself the day before. Ivan was sent off to school, while his mother stayed to tend to her son. Her help proved too late, as he soon perished peacefully in her arms. This was the turning point for the whole family. A month after the death of his second son, Ivan’s father gave up everything he had to immigrate to the U.S., and began making preparations to bring the rest of his family to what he hoped would be a better life. Fortunately, he soon befriended a good man, who helped him make a new life for himself and his family, and got the information he needed to find care for his son. Life soon turned for the better, as Ivan and his mother were able to immigrate to the U.S. With the help of the many wonderful people at our local hemophilia treatment centers, Ivan soon received his first factor treatment and the appropriate care for his left knee that had suffered damage as a result of repeated bleeding episodes. He and his family no longer had to worry about recruiting people to give blood, or about getting the proper treatment – they were in good hands in our community. Although this story resembles the stories of many individuals who grew up in the U.S. before factor concentrates were available, in many countries in the world individuals still do not have access to state of the art treatment. Many do not have any treatment at all. While cryoprecipitate has been available since 1964, and lyophilized (freeze-dried) concentrates of factor for since 1966, many around the world did not, and still do not have access to these treatments. Today’s treatments for hemophilia are far more advanced than those available in the 60’s and 70’s. Although many children still have bleeding episodes, it is extremely rare that a family would have so many devastating medical misfortunes. Ivan’s story, although filled with sorrow, had a happy ending. He was happy, healthy, and successful, in his own right. Most of all, seeing first hand the devastation that inadequate medical attention can have and the positive impact of a helping hand, he dedicated his life toward helping others, like himself, who have hemophilia. This is the same dedication that many of the Foundation’s most ardent supporters have shared. They have seen the devastation and the power of intervention, and are willing to help others, like themselves, make a better life. Sadly, Ivan passed away on March 15, 2008. While we will miss him, he will not be forgotten. The world is a better place because of Ivan. He triumphed over adversity and touched many with his courage, a positive “can do” attitude and dedication to helping others.

Raising A Child With Hemophilia

By: Laura Jimenez
Parent of a Child
with Hemophilia

My name is Laura Jimenez and I’ve been asked to share my experience as a mother of a boy with a bleeding condition, my son Albert has Hemophilia A, severe. This is the first time that I’ve written something like this. I would like to start by sharing that I came to this country in search of a better future and this is where I met my husband Alberto Jimenez. From the moment I found out I was pregnant with our first child, I was scared that I was going to have a boy. I gave birth to a beautiful baby girl, Jessica, and I was very happy and enjoyed her a lot. However, she was very lonely and wanted a brother or sister, so my husband and I decided to have another child. In May I found out I was pregnant, and from that moment, the fear that I would have a boy took over me again. The simple fact that the baby could be a boy and that he could have Hemophilia frightened me. During my childhood I had seen my brother and my uncle suffer with this condition. Maybe my fear was not for him, but for me. Because even though I had seen others in my family living with Hemophilia as I was growing up, I did not live through it with them. I realized then that I had ignored everything having to do with Hemophilia while growing up around it. Through an ultrasound we discovered that I was going to give birth to a boy. From that moment on, my anguish was greater, my fear had been confirmed and on many occasions it nearly drove me to craziness. Fortunately my daughter was in Mexico at the time. I spoke to my family more often at that time than I had since I had moved to this country. Nevertheless, nothing that they could tell me would calm me down. On March 8th 2001, Albert was born and two months later my terrible suspicions were confirmed when his doctor told us Albert had Type A Hemophilia, severe. At that moment I felt like I was going to collapse!!!!!!!! This time, when talking to my family I realized that I was not alone. My grandma, my mother, and my sister were able to do it, and I knew I needed to face this with courage and all the love I had for my child. And that’s how I started on the path to bring my son the chance for a better quality of life. During the nights when my husband and my children were sleeping, I would admire Albert while he slept. I would look at him, so defenseless, and I would think of so many things that I can’t even explain. But it was then that I understood that God does not make mistakes, and that he would not send me one of his angels who is sick, unless God was sure that he would be strong enough. In Mexico, the hospitals don’t have the factor or the goods that we have here; for obvious reasons, many people can’t work in institutions that offer insurance and they find themselves dying slowly, with the agony of no medical attention. This is the case of my brother and my uncle, who were in the hands of agencies without the appropriate medicine and in the hands of neglectful doctors with no ethics. Recently, I was talking to my brother who told me that he “would rather suffer the pain”, since his biggest fear is that he could get infected with something like AIDS. There are moments when I question whether I am doing the best thing for my son. One of the biggest dilemmas I have faced has been whether or not to have a port surgically placed to help with infusions. I know that I am only scared because of lack of information. It has been difficult for me to confront all of this, since I see myself fall all the time, but without collapsing!!!!!!!!!! During this time, I have come to rely on the support of my family and the Hemophilia Foundation. I educate myself through different Hemophilia publications and learn a lot from the experiences of my family, which are too long to tell. The most difficult part of all of this is that it has affected my husband and my daughter, two lives for whom this has not been as easy to accept. Because all of this is very new to them, sometimes they don’t understand my concerns and mood changes. At times we may not agree with each other or be the best of friends, but I hope they understand that we have all become victims of fear that Albert might fall, get hurt or that someone will hit him and that is why we frantically jump every time. I believe that time and the love that we have for Albert will help them get to the point where I am at right now, to understand that our angel will change the path in our lives for the better. For all of this and more, I want to take this opportunity to ask my family for forgiveness for all the times that I might have offended them. I would also like to tell all the families with special people like Albert not to give up, but instead, to take a moment to thank God, and ask him to give us all strength to support them. This way we can leave in our paths something better for those that are forthcoming.

Lessons I Have Learned

By: Corey Parker Person with Hemophilia

It was 1992, I was 21 years old and had just been drafted by the Detroit Tigers to play minor league baseball. I was sent to Niagara Falls, NY, with some of the best players from around the country and was determined to show them that I was strong, that I belonged there, and that my Hemophilia was not going to hold me back. Two weeks into the season I was up to bat and was nailed by a fastball in my right elbow. It started to swell immediately. The team trainer came over to see if I was all right and I told him that I was fine and just needed some ice. I didn’t know how to self-infuse, and I surely wasn’t going to go to the hospital just because I had been hit by a ball. I was determined to treat my injuries like all the other players did. I was sure that after a night of icing and praying, my elbow would be okay. I was wrong - I woke up in the morning with my elbow the size of a small watermelon. I had waited too long to treat my injury, and now had to deal with all the bleeding into my elbow before there was any permanent damage. Fortunately, I knew that physical therapy was my best plan of attack. My physical therapist had recommended that I treat with factor before each therapy session to assure that I would not complicate things and cause more bleeding. We would work together to work the fluid out of the joint and then slowly increase my range of motion until it was back to normal. Finally, we would work to strengthen the joint to help prevent more bleeds in the future. I continued in baseball and played six years in the minor leagues. Unfortunately, I never finished a season without being out for at least a month with a minor bleed that had turned into a major one because I hadn’t treated it early enough. Years later, after my baseball career had come to an end, I realized that the way that I dealt with my bleeding disorder was holding me back, not the fact that I had Hemophilia. It took me a long time to accept the fact that I am different than the other players because of my bleeding condition and, as a result, I need to take better care of myself. My involvement in sports and the Hemophilia community have worked together to improve the quality of my life. My parents were always very supportive of me and my brothers, but as an adult with mild Hemophilia (Factor VIII), I have come to realize the benefits of being involved with the bleeding disorders community. As I have listened to others share their experiences, I have learned a lot about how to better manage my condition. Building relationships with others in the Hemophilia community has helped me tremendously. One example of this was when I went to Hemophilia camp for the first time as a volunteer at the age of 26. I remember watching two 9-year old boys with severe Hemophilia playing catch in front of the recreation room when one of the boys fell on his knee. He picked himself up, wiped the tears from his eyes, went to the infirmary to infuse himself, and, within a matter of minutes, was right back outside playing catch again. I couldn’t believe that this 9-year old with severe Hemophilia had more control over his bleeding disorder than I did. That was when I realized what an important role the foundation plays in the Hemophilia community. It provides an avenue where families can get together and learn from each other, and summer camp is a great place for kids to take ownership of their Hemophilia and learn to take care of themselves. If I had taken advantage of some of the great programs the foundation had when I was young, I might have learned how to infuse and taken a more aggressive approach when dealing with my injuries. Becoming involved in the Hemophilia community has helped me to educate myself and given me a much better understanding of how to take care of my bleeding disorder. But the best part of my involvement is great friends I’ve gained. I have never been around a group of people who care so much for each other. It’s as if there is a special connection based on our similar experiences, and we are able to talk about anything with one another. My father had a quote pinned to the wall when I was young that read… “I used to complain that I had no shoes, until I met a man who had no feet.” I don’t know where the saying came from, and I’m not sure why it stayed with me, but I do know that it helped me to accept what I have and to make the most of my life. I believe our community is full of people who have done the same.