Archive for Thursday, June 24, 2004

Running with purpose

Family helping in race raising money for disease

June 24, 2004

Just weeks after the Relay for Life, some Eudorans will be slipping on their running shoes again, but this time for the United Mitochondrial Disease Foundation. And at 5 a.m. Saturday, Eudorans Ron and Terri Long will be on the sidelines.
The Longs have been volunteering to help pull off the first Mito-what? 5K Run/One-mile Walk, which is Saturday in Overland Park. Their 4-year-old son, Christian, is thought to have mitochondrial disease.
Terri Long said earlier this week about 190 runners and walkers had already pre-registered, including Eudorans on the unofficial "Team Christian," among them local cross country runners. Eudorans still wanting to participate can sign up between 7 and 8 a.m. Saturday at the race site, Corporate Woods Founders Park, 9300 Indian Creek Pkwy., in Overland Park.
Adults older than 18 pay $25 and children ages 4 to 18 pay $10. Children 3 and younger are free. The event includes a 5K race and a mile walk at 8 a.m. A kids dash begins at 9:15 a.m. The top three male and female runners will receive cash prizes.
Christian's seventh-grade brother Reece said he planned to enter the 5K, and fourth-grader Tate said he would participate in the mile.
Terri Long said proceeds from the event would go toward research of mitochondrial disease, which is not as well-known and therefore as well-funded as other diseases.
"The more money (raised), the better for all the patients," Long said.
Those wanting to donate but not participate in the race can send donations to KC Chapter, UMDF, P.O. Box 1286, Lee's Summit, MO 64063.
"Any money we make is money made," Long said.
About a year ago the family became involved with the two-year-old Kansas City chapter of the UMDF. The chapter has monthly support group meetings with other patients and families in the area.
By meeting with adult mitochondrial disease patients in the group, Long said the family was better able to understand symptoms Christian couldn't express. For instance, she said adult patients in the group said they often felt like it was a 90-degree day, regardless of the temperature.
"Stuff like that is nice to know," she said. "And they've all been through all the tests and know all the doctors."
The UMDF describes mitochondrial disease as what happens when the cell's "power plants" don't work properly. As a result, the body's most energy-needing areas -- the brain, heart, muscles and lungs -- suffer most. It is a disease for which there is no cure.
Although becoming more common, the disease is elusive to diagnose, in part because symptoms differ from patient to patient. Long said Christian's diagnosis of mitochondrial disease wasn't certain.
"But that's what we're going with for now," she said.
Since he was 2, Christian has been attending Lee Ann Britain Infant Development Center in Overland Park three days a week. Christian has participated in preschool as well as therapy in and out of class at the center, which has a pool and playground.
"Once we went there, I was like, 'He has to go here,'" Long said of the center.
Christian works on occupational, physicial, speech and music therapy, the latter of which Long said had him and other students singing, dancing and playing instruments as an outlet for expression and involvement.
This fall Christian will start the Preschool Enhancement Program at Nottingham Elementary School. Long said schools and the Eudora community had been supportive of Christian's needs.
"You always hear horror stories about people with special needs' kids who don't get this or that," she said.
Christian's latest challenge is learning to use a new motorized wheelchair, which has his name printed across the backrest.
"For a 4-year-old, he's a pretty good driver," Long said. "We've all had our toes run over."

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