By: Haley Richards
“It was as if an unexpected letter arrived. I did not ask for it and I could not return it. After a while I realized that I had no choice but to open it and immerse myself in it.”
This is how Rodrigo Osorio, a Chilean banker and businessman, describes his reaction on learning that his wife had HD. In 2008, Rodrigo and his family, just like thousands of families worldwide, began a difficult journey on learning that his family was affected by HD. I had the privilege of discussing Rodrigo’s experiences with him, a journey that has taken him from adversity to acceptance to action.
Rodrigo remembers, “My first emotions were of helplessness, fragility and darkness.” Osorio and his family were initially stunned by his wife’s diagnosis of HD and the multifaceted cruelty of the disease. He explains, “When I first tried to understand what the disease was, the first things that I read on the internet were that it was very dangerous, didn’t have any cure, and there is a 50% chance that each child has the disease. I could not continue. I saw a big wall in front of me.”
Adjusting to life in a family with HD was ultimately possible, but by no means easy. Coping with HD required fundamental psychological changes in both himself and his children. For Rodrigo, accepting its challenges changed his perspective. “I think that when one confronts these difficult situations, no matter the cause, one savors and appreciates the moments of happiness and periods of peace and tranquility much more. Above all I am more connected with the present.” As Rodrigo states, living with a family member who has HD requires “constantly making an effort to live positively and connect with the patient in all possible ways.”
Coping with HD also requires the shifting of family roles, as family members must compensate for the patient. Rodrigo describes such changes in his family. “My kids went from being cared for by their mother to taking care of her. I had to be both mother and father at the same time.” Nevertheless, Rodrigo’s family was united in the same challenges and goals throughout their struggle with HD. He explains, “There is a long process within the family that starts with accepting the diagnosis together, fighting it together, and later caring for the patient together.”
As coping with the difficulties and changes brought on by HD requires the participation of all members of the family, family unity becomes extremely important.
For this reason, Rodrigo was motivated by a family member to go beyond accepting HD, and start taking action. He explains, “When one of my children decided to take the test that was a turnaround moment for me. It was in that moment that I really decided to deal with this letter that I had received.” Rodrigo has since been actively involved in improving the lives of people affected by HD in Chile. Months after first learning about HD, he founded the Agrupación Chilena de Huntington (www.huntington.cl ), a network of HD patients and families. He describes the process of turning his emotions into action. “One of the ways of fighting the disease was to gather knowledge and help for other families confronting the disease and for families with the possibility of facing it in their future. This gave motivation for a group of families to get together and start the Agrupación.”
After founding the Agrupación, Rodrigo coordinated a center for clinical research and obtained accreditation by the Huntington Study Group. Rodrigo and his colleagues took further action in creating the “Hogar” (Spanish for “home”), a center for families and patients with HD and other neurodegenerative diseases to provide relief from some of the challenges in living with these conditions. Rodrigo explains, “The Hogar provides a program that is personalized using occupational, physical, cognitive, and emotional therapy.”
As exemplified by his achievements, Rodrigo was able to channel his energy in a positive way to improve the lives of many people in the HD community. He talks about how the difficulties of living with a person with HD influenced his values and actions. “No one changes their priorities in life, for better or worse, when they are completely happy. Facing this challenge with little hope on the horizon, I decided to change my priorities. I decided it was the time to give back to society. For me, doing something real and effective to help others, in collaboration with family and friends, allowed me to be not part of the problem, but instead to be part of the solution.”