Going the extra mile for Olivia: Local runners join in race to defeat Krabbe disease Going the extra mile for Olivia: Local runners join in race to defeat Krabbe disease (June 08, 2005)

By Jane Knoerle

Adam and Micheline Kemist, owners of the Runners High in downtown Menlo Park, are running a race with time with their daughter, Olivia.

Their blonde, blue-eyed 2-year-old daughter suffers from Krabbe disease -- a hereditary, degenerative disorder that affects the nervous system.

Children with Krabbe disease have a life expectancy of less than two years. So far, Olivia has beaten the odds.

For the first few months of her life, she was a seemingly healthy baby. Shortly before her first birthday, her parents noticed she was losing some of motor skills. Today she can no longer sit up, walk, talk or see very well.

The disorder involves the deficiency of one enzyme that keeps the myelin sheath, the insulator of nerves, healthy. Krabbe disease babies seem normal at birth, but after a few months they begin to develop symptoms such as fevers, seizures, feeding difficulties and slow mental and motor development.

To help combat the disease, the Kemists are hosting Olivia's Miles -- 1-mile and 5K runs to be held Saturday, June 11, in Menlo Park, starting at Fremont Park.

The runs, on a flat course through tree-lined streets, will benefit the Spark Foundation, a nonprofit that grants money to continue treatment for Olivia and children like her, and provides funds for research to find a cure.

The 1-mile race for competitive runners begins at 8:05 a.m. Runners will race from University Drive to Hermosa Drive on Santa Cruz Avenue, which will be blocked off from 8 to 8:30 a.m., according to Menlo Park Police Sgt. Matt Bacon.

The 5K race, open to both runners and walkers, begins at 8:30 a.m. Portions of University Drive and College Avenue, Arbor Road, Bay Laurel and San Mateo drives, Lemon Street, and Santa Cruz and Oak avenues will be closed from 8:30 to 9:30 a.m., says Sgt. Bacon.

A kids' run starting at 9:15 a.m. will take place within Fremont Park.

Entry fee for Olivia's Miles is $25 by mail or in person. On race day, registration begins at 7 a.m. Runners may also register online at active.com for $27. No registration is required for the kids' race.

Children under 12 participating in either run with a parent run free, but an entry form for each child must be submitted with the adult's registration. There will be awards for men and women in both races. Participants will receive T-shirts.

Breakfast goodies will be provided at Fremont Park. They will include organic fruit from JZ Cool, bagels from Posh Bagel, coffee from Peet's, and waters from Trader Joe's and Arrowhead Water. Also contributing or planning special promotions for Olivia's Miles are Draeger's, Peak Performance, Hirzel Fine Jewelry, Paper Chase, Cheeky Monkey, Preuss Pharmacy, Ritz Camera, Calla, Village Stationers, Vitamin Express, the Pet Place, St. Clair Gallery, Ana Williamson Architects, and OH, as well as the Runners High.

Adam and Micheline Kemist, who are both avid runners, have been proprietors of the Runners High for 10 years. They also recently opened a "retro" clothing store on Evelyn Street in downtown Menlo Park.

The new store is named OH, for the Kemists' two daughters, Olivia and Hannah. Eleven-month-old Hannah is not afflicted with the disease.

Entry forms may be picked up at Runners High, 859 Santa Cruz Ave., or OH, 1060 Evelyn St., Menlo Park. The Kemists also have a Runners High at 249 First St., Los Altos.

Tax-deductible checks to the Sparks Foundation may be mailed to Olivia's Miles, P.O. Box 1031, Palo Alto, CA 94302.

E-mail a friend a link to this story.