Child's illness leads to software innovation

By Janet Forgrieve, News Staff Writer
June 3, 2002

"I started to get sick in the year 1991. I was 19 months old when I collapsed and didn't walk for three whole weeks. I couldn't even hold a Cheerio and get it up to my mouth. When I finally did walk again, it was with trembling hands and legs. I fell all the time, and couldn't run anymore. I couldn't stand still, either." -- Genevieve LaGrow, from a school paper titled "Dystonia: What it is and What it Did to me."

EVERGREEN

Today, the tall, slim 12-year-old runs. She tucks her long blond hair under a bathing cap several times a week, before diving into the pool for swim practice. She rides, climbs and plays soccer and piano.

But first came seven years of uncertainty for her family, years of enduring the cruelty of kids who didn't understand. As Genevieve grew weaker, she needed a wheelchair -- something some of her friends couldn't handle.

"There was one group of four girls who were all my friends until I got my wheelchair, and then they all turned on me. They wouldn't even sit next to me at lunch. The moved to the other side of the multi just to get away from me. It really hurt my feelings."

Genevieve and her parents struggled through frustrating days, as they searched for the doctor who would properly diagnose her condition and, perhaps, find a cure. In addition to taking their daughter to doctor after doctor, Craig and Kimberly LaGrow also mined the ever-growing databanks of cyberspace for information.

Eventually, Internet information led Craig to the medical conference that would yield the best possible result -- a treatment that would give his daughter back her physical freedom.

Tracking down the culprit responsible for his daughter's condition, then finding the drug that would fight it led Craig to his mission. The tech savvy entrepreneur started Cyberstruction Enterprises in his Evergreen home last year, a startup that aims to provide information in a way that's helpful to corporations without overwhelming them with too much extraneous stuff.

If and when the company becomes profitable, Craig hopes to fulfill the information-age dream that's closest to his heart -- he wants to help people without his skills and background find the information they need to help their own Genevieves.

List of symptoms

Kimberly LaGrow's handwritten list of her daughter's symptoms and doctor visits begins on Feb. 1991 with the line: fever after MMR shot, unsteady, shaky. It ends with 5/12/98: Parkinson's Institute.

The lines in between detail Genevieve's worsening symptoms and varying doctors' opinions.

Early on, doctors didn't seem to take the problem that seriously. Later, as the symptoms worsened and the family worked its way through four different neurologists, the prevailing diagnosis seemed to be cerebral palsy.

Misdiagnosing Genevieve's form of Dystonia, called Dopamine Responsive Dystonia or DRD, is more common than not, said Rajeev Kumar, a pediatric neurologist at the Colorado Neurological Institute in Englewood.

Most often in children, the disorder is diagnosed as cerebral palsy, as it was in Genevieve's case. Over the years, doctors recommended braces to force her heels down, surgery to lengthen her muscles and botulism toxin injections to stop muscle spasms.

"I've seen people have tremendous operations for spasticity, simply because it can be difficult to differentiate from cerebral palsy," Kumar said.

In other cases, children are wheelchair bound for so long without using their muscles that, when they are treated, secondary orthopedic deformities mean they still can't move normally, Kumar said.

The LaGrows kept searching, trying to find information from any possible source, including the Internet. They didn't believe the diagnosis -- but they didn't yet have another name for it.

"It was frustrating," Craig said. "CP is basically static, the symptoms don't progress. Gen's was progressing and we were scared to death."

Fear cast a pall over the house, as Genevieve got weaker and spent more time in the wheelchair.

"We unplugged the TV for years," Craig said. "We went into a lonely, depressive cave."

Finally, a name

In late 1997, a doctor mentioned the possibility of Dystonia. The doctor, who himself had a form of the disorder, told the family about several possible drugs, but also said he had never seen Sinemet work on a child with the disorder.

Armed with a name for the disorder, Craig went back to the Internet. A Web site told him about a Dystonia conference in Seattle, and he booked a ticket and flew up from his California home. There he met Susan Bressman, head of neurology for New York's Beth Israel Hospital.

Dystonia is a neurological movement disorder in which involuntary muscle contractions force certain parts of the body into abnormal and sometimes painful positions. Different types of the disorder affect different parts of the body in different ways. In Genevieve's type, the body has low levels of dopamine -- a substance that sends messages from the brain to the muscles, telling them how to move.

After Bressman's presentation, Craig got a chance to talk with her. Skeptical at first -- only a small percentage of the 300,000 or so Dystonia patients in North America have the DRD type -- Bressman began to think it was more likely after Craig checked off a list of symptoms.

The toe-walking her parents and therapists had spent years trying to correct; the muscle weakness that got worse as the day wore on; the fact her symptoms were more severe as she got older. Bressman helped the family get an appointment at the Parkinson's Institute in Sunnyvale, Calif. (Dystonia has similar symptoms and often responds to the same medications as Parkinson's disease.)

Genevieve took her first dose of Sinemet in the morning of May 13, 1998, and went to school as usual. But her homecoming that day was anything but.

"Usually, I would run down the drive and put her on my back (when she got off the bus)," Kimberly said. "That day, the bus driver was standing there in tears and Gen walked around to me -- carrying her backpack."

The 8-year-old hardly realized the difference at first, her mom said. As Kimberly and the bus driver teared up, Genevieve fumed.

"She was mad at her teacher because she didn't get her way in class," her mom laughs now.

One little pill

One little daily pill made all the difference, and has in the four years since. A year later, the family moved to Evergreen because they saw it as a place where their active daughter could enjoy more riding and hiking, her dad said.

His persistence had paid off. It was a persistence that was evident early in his life.

Craig LaGrow was born in Detroit, moved to Los Angeles at age 8 and grew up "urban poor," he said.

"I have a high IQ and I'm angry," he says now, at 41. "I graduated against all odds, with a negative $50,000 net worth."

Craig and Kim met as UCLA undergraduates in 1979. A trip to visit Kim's folks in San Francisco convinced Craig the Bay Area was where he needed to be, so he transferred to Berkeley.

Halfway through his master's program in journalism at Stanford, in 1983, the pair married.

A year later, along with partner Carl Landau, Craig started a technology magazine. That grew into two, which the partners sold for about $6.5 million in the late 1980s.

During the next few years, he worked providing competitive intelligence to corporations, first as an employee of Bechtel Enterprises and later as a self-employed consultant.

Genevieve was born in late 1989 and brother Nick followed two years later.

A search for answers

Seven years of constant searching had led to the one little pill -- and to the mission Craig vows will guide the rest of his life. The technology and his business model are complicated, and are in the testing stages now.

The idea behind it is simple -- clearing up the clutter to help corporations, and eventually individuals, get the information they need quickly and succinctly.

There's growing evidence in the media that more people are using the Internet to double-check and in some cases replace doctors when it comes to finding medical information. But how do you find the right information amid the sea of data?

A keyword search for "Dystonia", for example, brings hundreds of hits. Start with the symptoms, "toe-walking" and "muscle weakness", for example, and more than 6,000 sites pop up -- beginning with a site that details cerebral palsy, the most common misdiagnoses in children with Genevieve's type of Dystonia.

That's where the LaGrows started -- with doctors who weren't sure what was wrong with their little girl and Web sites offering a swamp of information the couple needed hip boots to wade through.

"I had to start with a bunch of empty binders, look at the information about different diseases and eliminate things," Craig said.

His background in journalism, technology and competitive intelligence for corporations gave him the skills to persist, but even then he didn't find the right track until a doctor finally recognized the symptoms. He began to wonder what parents without his skills do in the same situation.

Creating software

LaGrow developed what he calls a human augmentation search and pattern-matching algorithm. He is creating software that will keep companies and their workers current on all the information they need while weeding out stuff they don't want.

In January 2001, LaGrow incorporated Cyberstruction Enterprises Inc. Later that year, he wrote a business plan, along with a letter to some of the friends he has made during his years in business, pitching the company and seeking angel investors.

He found seven, including Charles Dornbush, a friend of 10 years and former client of Craig LaGrow. Dornbush is founder, president and CEO of Massachusetts-based Athenium LLC, a firm that helps companies turn knowledge from their top employees into online content. The company can use that knowledge to improve overall performance, he said.

"I met Craig when he was working in San Francisco," Dornbush said. "We realized we were seeing eye-to-eye on some philosophical levels, and we became good friends."

Both were interested in how people gain knowledge and learn by interacting with each other and how people can use technology to make people more productive.

"Craig's building a useful engine, that serves as a filter and a seeker of information," he said. "It's going after what is an increasing problem and need for everybody, that is basically information overload. Most of us are bombarded with too much mail, e-mail and junk mail. It's like finding a needle in a haystack to know whether you've got something useful."

Solving the problem

Also in Cyberstruction's favor -- not many large companies are working on solving the problem, Dornbush said.

"There are people trying to do this kind of work, but it's pioneering," he said. "It's a huge idea. It's just so early stage that whether or not there's a business here, none of us know for sure. But that's exactly what early stage investing is all about."

Craig needs the company to succeed to pay for the second phase, his true passion. He wants to find a way to offer the same kind of service to everyone, rich and poor. He has been both, he said, and understands most people with a child like Genevieve don't have the tools he did to find answers.

He sees the two phases as David and Goliath. He would rather do David right away, he said, but he has to do Goliath first to pay for it. While the sale of his magazines and his years consulting afterward left the family comfortable, years of medical bills took a toll. Insurance companies refuse to cover Genevieve because of her Dystonia, and also decline to insure her brother Nick because they say there's a chance he may have the condition as well, although at 10 he shows no signs of it.

His passion for his cause and belief in the technology to accomplish it are evident in his conversation, which is rapid and takes many side roads.

"I realize it's not completely rational," he said. "I've devoted the rest of my life to something extremely abstract. I want to be remembered as somebody who compressed time."