At 6 years old, William Gomez already has a medical history longer than most adults: NICU stay at birth; formal diagnosis of hypertrophic cardiomyopathy at 22 months of age; cardiac arrest at age 4. His parents, Rich and Anne Gomez of San Pedro, Calif., spent hours researching options for their son, as they grew to understand the complexity of his disease.
They would eventually hear a more official diagnosis: Hypertrophic/restrictive cardiomyopathy form of biventricular non-compaction cardiomyopathy with systolic and diastolic dysfunction and LV dilation. William’s team of cardiologists is scattered across the country – pieced together to care for his complex and rare condition: an electrophysiologist, general pediatric cardiologist and even, for a time, a specialist in adult and adolescent cardiomyopathy.
William needed something more, they decided. They asked other parents who are members of his Children’s Cardiomyopathy Foundation listserve for advice.
“I kept hearing the name of Dr. Towbin over and over again,” Rich said. “This is the guy we have got to go see. I called and talked to his nurse. In an hour, he called me back and talked to me for 40 minutes. The next thing you know, we have an appointment in Memphis.”
The Gomez family was immediately impressed with their interaction with Towbin and with his expertise in William’s condition. They were reassured that the trip across the country was a good decision.
Since that call, the Gomez family has visited Memphis and Dr. Towbin. William continues on a drug therapy aimed at improving the relaxation of the heart and improving its efficiency with the goal of not requiring heart transplantation and preventing sudden life-threatening events.