Jacey's Race is much more than a fundraiser

The words are huge and not commonly used. They’re frightening and come with certainty that they’ll have an affect on your life and lifestyle. Words like osteogenesis imperfecta, athetoid cerebral palsy with seizures, osteosarcoma and neurofibromatosis.

These are the diseases of this year’s beneficiaries of Jacey’s Race. The stress, financial and emotional, that severe childhood illnesses and disabilities put on families can be overwhelming. The goal of this event is to alleviate that anxiety if only for a short while and to create awareness of childhood maladies.

“This is a race to educate the community and help kids,” said Nanci Jenkins, race founder and organizer. “It’s an emotional event, not just a money generator, children race free and we have a lot of children come!”

Although Jenkins emphatically asked that this article not be about her or her daughter for whom the race was named, there are a few comments that she made about her daughter’s cancer (over 10 years in remission) that are worth repeating.

She said that when Jacey was diagnosed she realized that she had to learn those big words, learn about internal organs and how they function.

Jenkins said she had an advantage because she worked in the medical field but other parents are starting from scratch.

“You have to learn about the drugs. You find yourself constantly checking to make sure mistakes aren’t made.” Jenkins said. “You are making huge life and death decisions, you’re thinking ‘my child is about to die’ and you have no time to process it.

“And, it doesn’t end when a child is in remission,” she added.

“We didn’t know what would happen when Jacey went through puberty. What would the secondary effects of the treatment be? Were there risks of other cancers, increased chance of leukemia, heart valve and muscle issues or effects on her bones?

So what are these diseases mentioned above? What are their families dealing with?

n Liam Marks is a 9-year-old with osteogenesis imperfecta. He has suffered more than 30 broken bones in his young life. OI is a genetic disease that is frequently caused by a defect in the gene that produces type 1 collagen, an important building block of bone. Besides multiple fractures the disease can cause deafness.

n Hieron Kline is 11 and suffers from athetoid cerebral palsy and seizures, which is caused by damage to the cerebellum or basal ganglia.

These areas of the brain are responsible for processing the signals that enable smooth, coordinated movements as well as maintaining body posture.

Damage to these areas may cause a child to develop involuntary, purposeless movements, which often interfere with speaking, feeding, reaching, grasping, and other skills requiring coordinated movements.

n Ashley Halliday, 21, is a student at Boise State. She has osteosarcoma a malignant bone tumor that usually develops during the period of rapid growth that most often occurs in adolescence. The cause isn’t known, but there have been cases where heredity was a factor.

n Drake Haskins is a 13-year-old diagnosed with neurofibromatosis. It’s is a genetic disorder that disrupts cell growth in the nervous system, causing tumors to form on nerve tissue. These tumors can occur anywhere in the nervous system, including in the brain, spinal cord, and large and small nerves.

If you want to help these families but need more information go to www.jaceys-race.com or mail donations to Jacey’s Race, 471 Ravenwood Drive, Sandpoint 83864.

Kathy Hubbard is a trustee on Bonner General Hospital Foundation Board. She can be reached at 264-4029 or by e-mail at kathyleehubbard@yahoo.com.