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Apodaca: Woman keeps fighting spirit in face of tragedy

April 05, 2014|By Patrice Apodaca
  • Frances Saldana poses for a family portrait with her children, Margie, Michael and Marie. Marie Portillo, whose Huntington's disease symptoms started when she was 15, died in 2009 at age 32. Margie Hayes died in February of this year at age 44. Michael Portillo, who is 41, is in a care facility. Frances wonders after each visit with him if it will be her last.
Frances Saldana poses for a family portrait with her children,… (Handout )

Frances Saldaña is a petite woman with a soft smile and big, kind eyes. But behind her gentle demeanor lies a will of iron that has proved essential to enduring a life of unimaginable tragedy.

Saldaña generously shares her story with anyone willing to listen, an act of courage in itself. Yet her decision to speak out, while for the most part an attempt to marshal action against the scourge that has decimated her family, can also be seen as an act of self-preservation. It is perhaps the only truly effective means to keep grief from consuming her.

The demon against which Saldaña fights is Huntington's disease, a devastating degenerative brain disorder that robs the ability to walk, talk and reason. The genetic disease, for which there is no cure, has over the past 25 years claimed the lives of her husband, two of her adult children, and will lead to the untimely death of her remaining child, a son who is now in the grips of end-stage Huntington's.

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Some people, faced with such heartbreak, might have curled up in a ball and surrendered to misery.

But not Saldaña. Her fighting spirit won't consider giving up, and so for many years she has worked tirelessly to bring attention to the plight of Huntington's patients and to raise money for research.

Consider a typical day for Saldaña: She works full-time as assistant director for corporate relations at UC Irvine's Paul Merage School of Business. Afterward she devotes at least a few hours to the foundation she founded, HD-CARE (Community, Advocacy, Research and Education). Then she drives to the care facility where her son lies, unable to move or speak. She holds his hand, gives him massages, and watches while he falls asleep.

It is late at night by the time she returns, bone tired, to her home in Fountain Valley, where "my poor husband" — she remarried 16 years ago — awaits. The next day she does it all again.

"I cry every day of my life," she said. "I take a deep breath and move forward.

"I don't think I could just stand by and let things happen and not bring visibility to Huntington's disease and what we suffer and what we'll continue to suffer if we don't cure this horrible disease."

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