Richard Nares

Looking from the airplane window as I traveled from San Diego to  Washington, D.C., I reflected on my journey and its purpose to advocate on  behalf of San Diego families, and all families whose children have cancer. My  mind and heart filled with hope and anticipation as the reality sunk in that I  had been chosen to participate in the Lance Armstrong Foundation’s LIVESTRONG  Day on Capitol Hill, a day in May when 100 survivors and co-survivors were given  the chance to share our concerns and knowledge with elected leaders to influence  national policymaking to improve the status of cancer research and  survivorship. 

The LAF has given me opportunities I never dreamed of to serve  families impacted by cancer. I do this in honor of my son, Emilio, whom I lost  to cancer six years ago. Indeed, my story is one of hope, courage, life, and  death. But most importantly it is a story of the most profound love possible,  the love of a parent for his child.

One year after I married my wife, Diane, our son Emilio was born.  He was the center of our universe and together we filled our lives with play,  laughter, and love. The amazing adventures that I have experienced in my life  never came close to the great satisfaction of living with Emilio. From a young  age he was bright and funny, clever, and kind—a little boy with the wisdom of a  saint. Through his infancy and toddler years, we had the time of our lives.

In the winter before Emilio’s third birthday he came down with  frequent colds, which our friends and pediatrician assured us was quite common  at that age. Our concern increased when a persistent fever wouldn’t go away. At  this time, bruises started developing on his arms and legs, and Emilio was  lethargic and pale.

Blood tests were run immediately and on the afternoon of March 25,  1998, we found out Emilio had leukemia. Shock, fear, and bewilderment took over.  I felt as if I was watching a horror film that had no volume. The following days  brought an abundance of medical information and the beginning of chemotherapy. A  new way of life was forcing itself upon us. I realized that I could no longer  control the situation. I could not protect my son from the suffering that  awaited him.

Emilio’s journey involved two relapses and three remissions.  Finally, his only chance to survive was a bone marrow transplant, but we never  found a matched donor. Desperate, we traveled to Boston Children’s Hospital in  the summer of 2000 to be part of a clinical trial with myself as Emilio’s donor.  Three months short of his sixth birthday, Emilio’s organs began to fail. He lost  his courageous battle on October 15, 2000.

From the onset of our journey, we had tremendous support, but  Diane and I were deeply aware that many families don’t have this support. In  response, Emilio’s legacy now lives on as the Emilio Nares Foundation (

). Our mission is to secure the  best possible treatment and highest quality of life for children with cancer,  with an emphasis on low-income patients. We have served more than 3,000 families  and added nearly 5,000 new stem cell donors to the San Diego Blood Bank.

Back in D.C., the participants gathered, acknowledged our home  states and exchanged stories. Speakers informed us of the current status of  cancer survivorship in the United States. We learned of the budget cuts and  arguments that existed regarding funding research for cancer.

Then May 17 arrived—LIVESTRONG Day. When I saw the California  state flag in front of Rep. Susan Davis’s office, I felt a rush of honor and  excitement. With great relief, I soon learned that not only Rep. Davis, but also  California Senators Dianne Feinstein and Barbara Boxer each shared a commitment  and dedication to support the need to increase awareness of and funding for  cancer research. Their goal is to make the government more responsible to the  more than 10 million cancer survivors in this country.

That evening, as I traveled back to San Diego, I witnessed the  most beautiful and inspirational sunset. At that moment, I understood that our  work was deeply meaningful and that we all need to keep the inspiration alive  and continue the fight.

Articles

A father recounts how LAF and advocacy helped him move past the grief of his son's death from leukemia.

Richard Nares

For My Son

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