The following story is an article written by a member of the global bleeding disorders community to the World Federation of Hemophilia (WFH). In this article, Lilian Graciela Bonilla from Honduras shares her story.
My name is Lilian Graciela Bonilla, and I live in the city of Juticalpa, Honduras. Today, I want to share my story with you as the mother of three boys with hemophilia factor IX. A big part of my story is the role the Honduran Hemophilia Association and the WFH played by providing us with donated clotting factor concentrates treatment.
I got married in 1992, and looked forward to building a family. When my first child was born in 1993 I was happy, but at nine months he began to have bruises all over his body. I was desperate, as the doctors could not provide us with a diagnosis, and I suffered thinking that it was a terminal illness. My second son was born in 1995 and had similar symptoms. It was then that I started doing everything in my power to find answers.
My husband and I moved to Tegucigalpa, the Honduran capital, to be closer to the best doctors. It was there that were sent to see Armando Peña, MD, a specialist in hematology. It was very hard for us as parents to discover that we had two children with hemophilia factor IX. Peña told us about a person—María del Carmen Agurcia—who, like us, was fighting for the life of a son. She was in the process of founding the Honduran Hemophilia Association. María has since become an important part of our family, and she has helped us face many difficult moments.
Now I have three children with hemophilia. I have been through many crisises because of their illness. One particular event will stay with me forever. In August 2015, my youngest son, who was ten years old, began to have pain in his abdomen and urinate blood. I didn’t have medicine and I didn’t know what to do. I called the Honduran Association of Hemophilia and I told María del Carmen what was happening. Then the most amazing thing happened—she told me that a some donated treatment products had just arrived. It arrived just when my son needed it to save his life. It is truly a miracle that organizations like the Honduran Association of Hemophilia receive donated treatment products through the hard work of the WFH. These efforts have saved so many children like my son and have allowed them to have a better quality of life. Thanks to these donations we have managed to get ahead. Today I want to thank all those who have cooperated with the patients with hemophilia in Honduras. Thank you!
About the WFH Humanitarian Aid Program
The expanded WFH Humanitarian Aid Program improves the lack of access to care and treatment by providing much needed support for people with inherited bleeding disorders in developing countries. By providing patients with a more predictable and sustainable flow of humanitarian aid donations, the WFH Humanitarian Aid Program makes it possible for patients to receive consistent and reliable access to treatment and care. None of this would be possible without the generous support of Sanofi Genzyme and Sobi, our Visionary Contributors; Grifols, CSL Behring, GC Pharma, our Corporate partners; and Roche and Bayer, our newest donors. To learn more about the WFH Humanitarian Aid Program, visit www.treatmentforall.org