Meet... Carlos Urrutia!
Carlos Alfonso Urrutia was born in Brooklyn, NY August 30, 1956 to Betty and Carlos Urrutia. He was the first of three sons. The family moved to Long Island in 1957. His father worked as an accountant. His mother was a nurse, earning a Master's degree at NYU. She also was a professor at Adelphi University. Her love of books inspired Carlos to become a life-long reader. From his dad, Carlos became a sports fanatic. As a family, they traveled a lot and had wonderful times together. It was an idyllic family with lots of love and happiness.
Then in 1969, Carlos Sr. developed a brain tumor and died in 1970. His mom was left to raise the boys herself. At that time, she started exhibiting symptoms of Huntington's disease although she was misdiagnosed for many years due to the lack of knowledge about HD among medical professionals. Life became unbearable for the family and the boys were moved to foster care.
As they grew, they all realized they had a 50% chance of inheriting the gene
from their mom.
As a youngster, Carlos needed to find out as much about HD as he could for himself and his brothers to prepare for the future. His goal was to reconnect with the medical profession which had let him down before. He met Dr. Nancy Wexler of Columbia Presbyterian and the Hereditary Disease Foundation in Sept 1985. Dr. Wexler gave Carlos the ability to trust again in the profession he often feared. Here was someone who truly knew and understood HD and the devastation HD families often endure. He was not alone for the first time and he had hope.
Carlos's passion in life continues as he educates others about HD and tries
to help direct them to finding resources for their problems. He is grateful to
have worked for Chase Bank in NYC and the National Security Agency in MD.
His passions are his wife, Karen and his wonderful children Jenna and
Jonathan, 14 and 16, who were adopted from Korea.