Scheel, Smith named recipients of Jaycee's Race fundraiser

SANDPOINT - Gavin Scheel, 2, rolls his body to get from place to place because his joints do not bend.

Scheel has arthgryposis, a disorder that occurs when a developing fetus does not have enough room to kick, stretch and tumble about, establishing connective tissue that

And anyone who witnesses a public outburst from Summer Smith, 8, might assume she needs a good talking to, a firmer hand from her guardian and grandmother, Jana Crawford.

However, Smith's uncontrollable outbursts have nothing to do with a lack of discipline.

They are related to opsoclonus myoclonus syndrome, believed to be caused by treatments for neuroblastoma, a cancer that forms tumors.

Neuroblas-toma either can be cured by surgery, but also may need chemotherapy or radiation therapy for treatment.

Both children will be this year's recipients of Jacey's Race - an event designed by Nanci Grayson Jenkins and her husband, Ron, to establish community support for children with a chronic or life-threatening illness.

Funds from the race will be used to help purchase materials for a wheel chair ramp for Bayview residents Stacy and Jeromy Scheel to make it easier to get their son in and out of their home.

For Summer Smith, Jacey's Race is a reminder to community members that appearances can be deceiving and assumptions hurtful.

Smith's friends knew that it would be physically difficult for her to keep up with them, but wanted her to play on their soccer team, Jenkins said.

During a game, however, a parent from the girl's team yelled at her because she was slow at kicking the ball.

“She was really doing the best she could,” Jenkins said.

Playing team sports is important for all children and especially so for those who can become isolated because of illness, said Jenkins, who coaches a softball team.

Most often, people focus more on competition than camaraderie and developing a child's confidence and camaraderie, she said.

Jacey's Race is named after the Jenkins' daughter, Jacey, who was diagnosed with Stage 4 cancer when she was 4-years-old. Jacey, now 12, is cancer-free and will begin middle school this year.

The family was living in Colorado at the time and a friend started Jacey's Race to help the family.

Jacey's Race organizers raised about $10,000 during last year's event - enough money to help pay for a bone marrow transplant for one of its beneficiaries - Kaley Smith, 7.

Mailed entries must be postmarked by July 5 and checks must accompany the registration form. Cost for the 5k for adults is $25 with the exception of race-day registration, which is $30. Kids 12 and under compete for free. The 1K for adults is $10. Tee-shirts will be given to all registered participants.

The event takes place at Sandpoint High School on July 13 with the 5K race at 8:15 a.m. and a 1K at 9 a.m.

People can register for Jacey's Race at Athlete's Choice, Centerfield Sports, Bonner General Hospital or www.jaceys-race.com

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