His creative communication takes different forms. He shuffles his feet on the hardwood floor.

"You want me to run?" says his mother, Kathleen King, with a laugh as she points to the freezer just a few steps away. On this day Robert had to settle for a purple Popsicle, because it was the only type on hand.

Purple may be a new word for Robert to speak, but Popsicles are definitely quite familiar. Robert's mother says she gives him Popsicles regularly because they help improve his grasp and correct his "trigger fingers," a common name for a painful condition in which a finger or thumb locks when it is bent or straightened. It's just one of the many conditions Robert suffers from because of a rare, recessive-gene syndrome called alpha mannosidosis, a deficiency of specific enzymes used for metabolic processes in the body. This degenerating syndrome affects Robert's hearing, brain, joints, bones and balance.

But the obstacles King faces as a parent of a child with alpha mannosidosis have forced her to develop relentless motivation. Not only is she devoted to serving her community as a member of the Saratoga City Council, but also she is a key advocate and chairwoman on the board of directors for the Silicon Valley Children's Hospital Foundation.

The foundation, started by King in October of 1999, has partnered with Santa Clara Valley Medical Center and Lucile Packard Foundation for Children's Health, which serves the Lucile Packard Children's Hospital, affiliated with the Stanford University Medical Center in Palo Alto. Currently, these groups are working together to assess the feasibility of building a children's hospital in San Jose.

But the dream goes deeper.

If a children's hospital were to be built, San Jose would no longer hold the dubious distinction of being the largest city in the nation without a children's hospital. For King, this would mean she wouldn't have to take Robert all the way to the University of California, San Francisco Children's Hospital to see specialist doctors. Nor would she need to go to the Lucile Packard Children's Hospital, an increasingly crowded facility because it serves patients locally as well as internationally.

Calling on doctors, community

Lately Dr. Jeff Kanel, a pediatric orthopedic surgeon in San Jose, only performs routine checkups on Robert. But he met King when Robert was just 1 year old and he completed a surgical procedure on Robert's back. A developmental back problem was another sign that led to Robert's diagnosis of alpha mannosidosis, of which there are only 224 cases in the world.

Until he met Robert, Kanel, like most doctors, had never heard of the syndrome, although he was familiar with conditions in the medical group under which it falls. Robert is doing better now, Kanel says, and his two bone-marrow transplants will hopefully prevent his condition from becoming worse. What struck Kanel most about King, he adds, was her devotion from the start to organize the foundation and hospital movement because of Robert.

"She's remarkable," he says. "Her drive and ambition seem to be endless."

Kanel, who is on the foundation's medical advisory board, says there have been several past efforts to open a children's hospital, but all were driven by doctors rather than members of the community. He says the other efforts weren't received well because they weren't presented to the community in the right way. They were physician-driven, rather than parent-organized.

But Kanel says he's confident King's efforts will be successful, because she has support from the community, the foundation, and Packard Children's Hospital and Valley Medical Center. While there may be some skepticism about the vision, Kanel says it will take time for people to realize the positive impacts of a children's hospital.

"Once it's up and running, the facility will be a shining example in the country of the way a children's hospital should be run," Kanel says. "But it took a life-threatening illness for somebody to realize that need. Robert is the poster child of this hospital."

Kanel also adds that he'll probably move his practice to the new hospital once it's built. According to a tentative timeline, King says groundbreaking could occur as early as 2006, and the facility would open its doors in 2008.

Dr. Christine Halaburka, a member of the foundation's board of directors, operates a private pediatric practice in San Jose. But Halaburka and King have something else in common besides the foundation. Halaburka has raised her son, now 24, who suffered from a rare and inherited chronic immune deficiency, making more than 40 trips to the operating room and spending countless hours at Packard Children's Hospital, about 30 miles away from her home.

"He couldn't be treated at local hospitals. He needed specialized care," she says.

Halaburka plans to admit her patients to the Silicon Valley Children's Hospital once it's opened. She described the foundation's mission to create a local, easily accessible community-based hospital that would provide for the healthcare needs of children as well as their families. Children would be cared for by pediatric-trained staff every step of the way through their diagnosis and treatment.

"We want it to be a local hospital for local children who need to be treated," she says.

Halaburka says King's persistence has been amazing, especially when she called 115 pediatricians in the South Bay to earn their support and cooperation with the foundation.

The 75- to 100-bed children's hospital will be built on existing land adjacent to Valley Medical Center's campus, at the corner of Bascom and Moorpark avenues near downtown San Jose. VMC currently does not have a children's hospital, King says, so it was a good fit for the new location. King says the facility will probably be attached to the existing hospital, and Packard will contract with VMC for some services.

Dr. Chris Whitney, a Los Gatos pediatrician on the foundation's medical advisory council, says a "child-centered" hospital is needed in the Silicon Valley. He adds that it would offer medical expertise, equipment and specific resources that can't always be found at adult hospitals.

"The council is involved with helping implement the goals of the foundation," Whitney says. "We act as a voice for the doctors."

The council is composed of eight pediatricians, four who are specialists and four who deal with primary care, and all come from throughout San Jose. The doctors help the foundation make decisions and provide invaluable input, because they regularly send their patients to children's hospitals.

Whitney says parents today want the best possible care for their children. And the beauty of the collaborative effort is that VMC already has the framework and staff in place to support a children's hospital, Halaburka says, as well as an existing pediatric intensive care unit and an outstanding burn division. The children's hospital will also have improved quality care, with staff such as "play therapists" who are trained to work with children and their families.

"There is a real enthusiasm behind this movement because members of the board have had children of their own hospitalized, thus we have experience being parents," Halaburka says. "We want the best care for our children."

Applied support

Applied Materials Inc., a Santa Clara­based company that supplies products and services in the global semiconductor industry, is also King's former employer of 23 years. The company is backing the foundation financially, supplying almost half of what the foundation has been able to raise so far for the children's hospital. King says the company is helping to fund the children's hospital needs studies assessment and business plan. They are treating the nonprofit foundation like a startup company.

"It wasn't just the money," King says. "It was the business experience and the advice they gave, too, that really helped."

King says the company's chairman of the board of directors, Jim Morgan, has always been focused on helping the community and its employees. So when King, who worked in sales and marketing for the company, had to take a 6-month family leave of absence because of Robert's continual illnesses and bone-marrow transplants, the company supported her without question. King says the company thinks long term about its employees.

"At the time Robert was really sick and I was managing over 100 people, and it just wasn't working to do both," King says. "By the time he was 2, he had spent 10 to 12 weeks in the hospital."

Photograph by George Sakkestad Twin brothers Matt and Robert, age 7, cling to each other at their Saratoga home as they share a special moment.

Kathleen, 47, and her husband, Mark Stark, 44, have a blended family of five children. Marie Stark, 14, is a freshman and a cheerleader at Saratoga High School. Allyssa Stark, 11, is a seventh grader at Redwood Middle School, and six months apart from her is Nick Olsen, 11, a sixth grader also at Redwood.

Matt Stark, 7, who is Robert's twin, is a first grader at Foothill Elementary School, and Robert (Stark) is a first grader at Oster Elementary School in San Jose, a county program for the hearing impaired. All of Mark and Kathleen's children live in one full and noisy Saratoga household.

The twins were born June 20, 1996, at Stanford University Hospital. At first, Kathleen and Mark thought Robert's problems were birth defects.

"We could see almost everything ourselves because they were twins," King says. "You could feel the back of one and feel the back of the other and say this just doesn't feel right. You would see one jump at noise, and one not. You would see one growing much more and the other sicker."

Weekly trips to the pediatrician and genetics groups, as well as two back surgeries, eventually brought the definitive diagnosis. Robert's first, although unsuccessful, bone-marrow transplant was "a walk in the park," says King, compared to his second transplant. Robert's generous bone-marrow donor, Robert Heinis Jr. from New Jersey, was called back for the second transplant, and this time Robert underwent radiation.

"It was the worst thing Mark and I have ever been through," King says, adding that one of the hardest parts was getting close to other families in the hospital and watching some of those other children die—as well as see their son come close to death.

"He spent seven months between the two [bone-marrow transplants] in a room—never leaving the room," King says. "And he would just be thrilled when we'd come see him."

Robert, who once had the AB positive blood type of his father, Mark, now has his donor's blood type—O positive. During his younger years, King says, Robert will remain a pretty happy-go-lucky child and will be fairly resistant to pain, but as he gets older he could be affected by severe arthritis and moodiness.

King keeps her cellphone constantly by her side just in case a doctor or one of her children calls. And to keep track of where her kids are at all hours of the day, what time each of their schools lets out and who is driving which carpool, King compiles a matrix calendar/schedule every week. But King says she doesn't mind being busy.

"I like holding a bunch of balls in the air. The only stress is that I'm not a really good one at being on time," King laughs, since she was late to the interview.

Simultaneously, Robert, wearing a red Power Rangers T-shirt, flaunted his super action hero kicks and punches across the family room.

"Mom, watch this," Robert cried out, until he received his mom's undivided attention.

Robert tells his mother every day how much he loves her and often clings to her for affection and comfort. And when King needs a break, Robert is content to watch the same video over and over again.

King's persistence

About 10 hours out of her week, King serves as a member of the Saratoga City Council, although eventually those hours will be longer because positions on the council rotate. King, who has been on the council since December, will likely later serve as vice mayor and mayor.

"It's pretty interesting learning about your own city and your county, and even now, cities have to look at what's going on at the state level because it's affecting their revenue stream," King says. "So it just opens up a whole new area to understand."

King supports Saratoga's schools, parks and especially tree ordinances.

"We need to protect our trees because it's really what gives us our rural look," she says.

King has officially lived in Saratoga about 14 years, but grew up five miles away, so as a child she remembers playing in the creeks in Saratoga. She attended Rogers Middle School and Blackford High School, of San Jose.

"I always wanted to be in Saratoga," she says. "I knew that as a kid, so the nice part about being on the city council is that you get to have some effect on the environment you live in."

But the foundation takes up more of her time than her work on the council. King's motivation for the foundation and the hospital doesn't just come from specific experiences, she says, but her whole life and her husband's life.

"Compared to Robert almost dying twice, most things just roll off our backs," King says. "If all of your kids are healthy, the rest of life is just a pleasure. The painful part is that you meet other children, and you lose other children that you get close to. And that's the most painful part of life. The rest is almost pure joy."

King says their experiences with Robert have changed the family's focus in life. Marie, Allyssa, Mark and Kathleen now take private sign-language lessons every Monday night to be able to better communicate with Robert as he gets older. Signing is difficult for Robert, King says, as his little hands do not want to match what he is saying, but the whole family is trying. Monday is the one night of the week when the kitchen is fairly quiet.

On another afternoon at the Stark residence, Robert was playing soccer—not on grass, but in the living room.

"I got it! I got it!" says Robert, picking up a soccer ball with his hands. Robert might make a good goalie, King says, since he'd rather pick up the ball than dribble it. A beaming smile spread across his face—pride mixed with giggles—as it usually does when Robert knows he's the center of attention. As King watched him, she says playing soccer helps to improve his balance.

Robert shows off his blue socks, shin guards, shorts and soccer jersey; he participates in the American Youth Soccer Organization VIP Program, designed specially for children with disabilities who want to play sports but possibly never have had the opportunity.

"He is just so excited to have his own uniform," King says.

When the Geckos played the Mustangs on Sept. 28 at Congress Springs Park in Saratoga, the parents of all the players bordered the sidelines, and volunteer buddies were matched up with each player to guide them on the field. Mark says it's important for the players to learn and remember a skill and repeat it slowly.

Midway through the game, with tears in her eyes, Barbara Pease watched as her son Derek, 8, who suffers from motor challenges, moved the ball downfield with Robert to score a goal.

"Me and Robert worked together," Derek shouted, raising his hands over his head in a sign of victory.

Mark, who has been working as a marketing director with Applied Materials for 12 years, helped coach the players during the game. He says the program serves as a way for players to engage in an activity physically while developing self-confidence. It's noncompetitive, so the teams don't keep score. Despite their busy schedules, Mark says he and his wife try to attend most of their children's extracurricular activities. He described King as being gifted in perseverance.

"We couldn't do all the things we do without Kathleen," he says. "When she says she is going to do something, she does it, even if it means staying up ridiculously late."

After the kids go to bed, that's when King has time to check her emails, return phone calls and set up meetings. Mark says that before Robert came into their lives they didn't have the same kind of balance between family and work that they do now. Robert changed their perspective on what's important in life, and the Starks are now more involved in charities and volunteer their time in the community.

"For both of us," Mark says, "we know that family comes first and we're not going to sacrifice that."

For more information about the Silicon Valley Children's Hospital Foundation, visit http://www.svch.org.