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.
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."
There was a time when such an existence seemed unthinkable to Saldaña. As a young bride married to her childhood sweetheart, Saldaña was already the mother of three small children when her first husband, Hector, was diagnosed with HD. He died in 1989 at age 42. When daughters Margie and Marie and son Michael were old enough to be tested, they were all found to carry the defective gene. Their fates were sealed.
But the age of onset and progression of the disease can vary. Fate cruelly chose Saldaña's youngest child, gentle, sweet-natured Marie, whose nickname was Snow White, as the first to be struck. Symptoms began showing at age 15, and she passed away in 2009 at age 32.
Margie, a vivacious extrovert who loved giving hugs, died in February. She was 44, and left behind a husband and two children. Michael, 41, an entrepreneur who once ran his own restaurant, was close to death a year ago but somehow held on. Now Saldaña wonders if every visit will be her last.
She holds tight to hope that future generations may be spared.
Indeed, UCI researchers are among those fighting against time and a perpetual shortage of funding to try to unlock the mysteries of Huntington's. First identified in 1872, the genetic disorder has often been misdiagnosed or overlooked, despite some attention afforded by one high-profile victim, legendary folk singer Woody Guthrie.
At UCI, efforts are directed at trying to understand how the HD mutation causes brain cells to become defective and ultimately die, and toward investigating potential stem cell treatments, said Leslie Thompson, a UCI neuroscientist involved in the research.
"Right now we can only treat the symptoms," she said. But after decades of hard work, she said, "It's the most hopeful time I've seen. I think there will be a treatment in the very near future."
But that will require enormous resources, and because government funding is sparse, that's where organizations like HD-CARE come in. The foundation has sponsored galas and charity walks, and has a large team participating in next month's OC Marathon. Thompson said such efforts are "absolutely invaluable" to keep research going.
It's not just the monetary contributions that matter, but Saldaña's unwavering devotion, she said. "What we do is because of families like hers. It motivates us every day."
One need only glance at Saldaña's cherished family photographs to understand. Some are like those of any other family: a school play. A wedding. Baptisms. Dances. Halloweens long ago. But the images of happy, vibrant faces give way to others showing wasting bodies and the blank expressions of diminished minds.
"I've been fighting this disease for so many years," Saldaña said. "I really thought there would be something for my children."
Two months ago, she held Margie's face in her hands and kissed her as she felt her daughter slipping away. When Margie died the next day, Saldaña cried out, "Why?' "
Perhaps her long and valiant struggle will one day help to save others from that anguish. For now, that's what she lives for.
PATRICE APODACA is a former Newport-Mesa public school parent and former Los Angeles Times staff writer. She lives in Newport Beach.