Last year, 21-year-old Mary Cousineau, from San Clemente, Calif., spent five months with her family in Minneapolis caring for her brother Evan, who would eventually die from a rare genetic disorder. Seven months later, Mary would return to the same Minnesota hospital to save a life by donating a kidney to a 3-year-old boy she met during her brother's illness. Here is her story, in her own words..
In April 2007, I was very grateful for a lot of things in my life. I was attending a great university. I was playing water polo with teammates whom I really enjoyed. But most importantly, I had an amazing family. They were so supportive, and I was abundantly grateful that they were my family. All six of us -- my parents Mark and Gina, younger brother Derek, and the twins Evan and Alaina -- were healthy, and very active in one another's lives.
I would never have imagined that any of that would change.
However, on that last and fateful day of April, my youngest brother, Evan, had a seizure, and our lives would never be the same. I will never forget when I got the call from my mom telling me what had happened and that they were in the emergency room.
Instantly, it felt as though my heart had dropped into my stomach. This thing that I have now come to refer to as my women's intuition told me that something wasn't right. This wasn't going to be an easy fix. Evan was shortly transported to a major children's hospital in the area where my mom and I slept with him that first night. Little did I know that that would be the first of many hospital stays for Evan with the two of us at his side.
The next day my family was obviously in a panic. My mom was constantly crying, and despite my feelings, I encouraged her in thinking it was nothing, that all would turn out well for our perfect little family. We tried to keep the children as unaware as possible to what was going on. My parents were in meetings with different doctors all day, and when we finally knew what was going on inside of Evan, it was my dad and I who were in that meeting.
The doctor informed us that Evan had adrenoleukodystrophy, and that his condition was, surprisingly to us, very progressed. With this disease, generally you only know you have it once it's too late. We were informed that it would be a slow and painful death within the next six to12 months.
Obviously, we were thrown into a state of hysteria and panic. Our perfect lives had been shattered, and we had no idea where we would be taken on this new journey that we wanted nothing to do with.
However, the next day we were provided with hope, and hope is a big thing when you have nothing. The doctors informed us of what was going on at the University of Minnesota Medical Center. Doctors there were treating these boys who were "too far gone" for previous treatments. They were using marrow and stem cell transplants to hopefully rid their precious bodies of the problem. Once again, we never knew what a vital role bone marrow would later play in our lives. We began searching the national marrow registry for a match for Evan, and soon came up with two cord blood matches. Cord blood is taken from umbilical cords after a baby is born, and this vital fluid gave new life to Evan.