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"She likes to explore," David Sanda said.
The Sandas' boys have shown no signs of NP-C. Elijah was a month old when Emily was diagnosed. Doctors told the Sandas there was a 1-in-4 chance he would also have the disease. They opted not to have him tested. Jacob also has not been tested.
"We decided we wouldn't have any more children, because we didn't want to take the risk," Rachel Sanda said. "Jacob was a surprise. ... Now we call him Elijah's blessing, because he'll still have a sibling to grow up with after Emily is gone."
Soon after Emily's diagnosis she began taking a drug called Zavesca, still considered experimental for use by NP-C patients. It slows the effects of her disease, but it won't cure her.
The Sandas went nearly broke paying the drug's $5,000-per-month cost before they figured out that David's mother's health insurance is among the few that will cover experimental uses. In 2006, they legally gave up custody of Emily to her grandmother so they could get the drug for free. (Emily still lives with her parents.)
The family moved to Oklahoma near David's dad about two years ago. David Sanda works for a contractor there and is going to school to become a physical therapist. Rachel Sanda is a stay-at-home mom.
"We're not rich but at least we were able to buy a house there," David Sanda said. "We knew that wouldn't be an option in California."
The Sandas are here for a month-long visit, staying in Atwater with David Sanda's mom, Elizabeth Schultz, who teaches at Crookham Elementary School in Winton.
"It's great to have them here," Schultz said. "I'm just trying to enjoy Emily and not think so much about what the future is going to be like. ... She's my only granddaughter."
Besides spending time with family and friends they left behind when they moved, the Sandas are trying to gather at least a few thousand dollars for NP-C research while they're here. So far, they've sold about 30 tickets for Saturday's fundraiser. They're hoping for a lot more in the next couple of days.
The Ara Parseghian Foundation has paid for most of the studies that have been done on NP-C. It has raised about $33 million since it began in 1994. Right now, the organization is funding 25 research projects across the country. It's named for the well-known Notre Dame football coach who lost three of his grandchildren to NP-C.
Peg Romano, the foundation's assistant director, said efforts like the Sandas' are especially important because NP-C is so rare.
"When so few people are affected by a disease it's really difficult to generate enough funding," Romano said. "We really couldn't do it without families like the Sandas."
Their work toward a cure is even more remarkable in light of their circumstances, she said. "Families with NP-C often live very challenging lives, including financially. And yet, the Sandas take the time to do these fundraisers, and they pass on all the money."
The Sandas don't seem to think their efforts are anything special. "It helps us cope," Rachel Sanda said. "It's something positive we can do. That's all."
And coping they are.
"When Emily was first diagnosed, I thought I'd never smile again," David Sanda said. "But we're really OK now. We're happy.
"We're taking advantage of the time we have with her."
Reporter Corinne Reilly can be reached at (209)385-2477 or creilly@mercedsun-star.com.
