Afflicted With a Rare Disease Called HIBM, Daniel and Bobby Darvish Have Devoted Their Lives to Finding a Cure

Bobby believes his first marriage gave him a glimpse of what his life would have been like without illness.

"If I didn't have HIBM, that probably would have continued — the doctor, the trophy wife, the nice house, the nice car. But there wasn't a real foundation or a soul mate kind of thing. I got to see that," he says. "But it's hard to do what-ifs."

PHOTO BY ANNE FISHBEIN

The brothers believe they'll have a treatment or cure in five to 15 years.

PHOTO BY ANNE FISHBEIN

Bobby Darvish and his wife, Sandra

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• Sandra Darvish
• Yadira Valles-Ayoub
• Bobby Darvish
• Rare Diseases
• Nonprofits and NGOs

Bobby tends to describe life in terms of a storybook — with interesting "twists" and central "themes." He sees the hand of fate in how his life has unfolded.

"Even though I'm a scientist through and through, there's something," he says. "And that something's watching over us. That something is rooting for us."

Around the time he divorced, Bobby went to a conference in Vancouver to talk about the HIBM research lab. One day he took a tour, and ended up falling in love with his guide. When he returned to L.A., he told his friends he'd met the girl he was going to marry and have kids with.

Later, Bobby and Sandra eloped to Kauai, with the wedding ceremony on the beach at sunset. Sandra Darvish was approaching 40 when they started trying to have children via artificial insemination. About four years ago, she gave birth to their son, Niels.

Sandra devotes her days to taking care of her family, in addition to helping the Darvishes with fundraising and outreach efforts — she plans parties, helps out with a newsletter and answers patients' questions about HIBM online.

"I love [Bobby], I want to be with him, and I don't want him to go through it by himself," Sandra says. "That was just not an option for me."

Daniel's love story also was shaped by HIBM. He initially hired the woman who was to become his wife, Sheila, as a lab administrator, and she moved to the U.S. from the Philippines for the job. She needed a place to stay and ended up living with Daniel and his mother, acting as a part-time caretaker for him and sleeping on a mattress in the living room.

While waiting for her visa to be processed, Daniel proposed to Sheila several times so that she could visit the Philippines and return to the United States. She turned him down each time, believing that the only reason to marry is for love. But eventually, feelings developed.

"We were really getting close — not kissing, but holding hands," Sheila says. Both she and Daniel are old-fashioned and committed to their religious beliefs, she says.

Finally, the last time he proposed, about eight months after they first met, she said yes. Their son, E.J., is now 2½ years old. He was an accident — Sheila didn't want kids, thinking that it would be too much given her husband's condition. But once she became pregnant, she changed her mind.

Both wives say that looking after their husbands and sons can be exhausting. Each night, they wake up three or four times to roll their husbands over in bed, as the brothers are unable to turn over themselves.

Start to finish, research and development for a new medicine takes around eight years and typically costs between $4 billion and $11 billion, according to an estimate from the InnoThink Center for Research in Biomedical Innovation. The Darvish lab has subsisted off a mere $4 million over 10 years, sometimes delaying the next step in its research because funds are lacking.

The lab is housed in Reseda, in a strip mall that contains more than a dozen other companies, including a nail salon. There are four rooms — the main one is filled with equipment, most of it hand-me-downs.

"We count every single penny," Valles-Ayoub says.

The lab runs almost entirely on funds from its nonprofit fundraising arm, supplemented by small grants from the government and other groups, says Valles-Ayoub. Its only researchers are the Darvish brothers; seven undergraduate interns, who are all aspiring medical students; and Valles-Ayoub. Her salary is $4,000 a month — a pittance for someone with both an M.D. and a Ph.D.

"It's all about the money," Bobby says. "If I had it, I wouldn't have to deal with other politics, the pharmaceutical industry and so on."

The problem is that HIBM only affects about one in a million people worldwide. Given the small market size, along with the high costs of bringing a new drug to market, pharmaceutical companies historically have not seen a way to profit from developing treatments for rare diseases — even though cumulatively, rare diseases affect approximately 30 million people in the United States.

Such disorders are difficult even to diagnose. For one-third of patients with a rare disease, it takes five years or more to obtain an accurate diagnosis, says Mary Dunkle, a spokeswoman for the National Organization for Rare Disorders (NORD).

After that, treatment is frequently nonexistent. Of the 7,000 or so known rare diseases, medications are available for fewer than 300.

The small number of people affected by each rare disease can be a major obstacle, says Ian Phillips, who directs the Center for Rare Disease Therapies at the Keck Graduate Institute in Claremont. It may be difficult to gather enough patients to test drugs on, he says.