Thursday, October 15, 2009

Walking in their shoes a good lesson

Roxie Sprinkle is 7 and recently triggered a family celebration when she said one simple word: "No."

At 6 months, doctors said she was profoundly hypotonic ("floppy infant syndrome") -- a disorder that that causes low muscle tone. At 7 months, she started experiencing seizures, often dozens a day, until a special diet limited those to ultimately two or three a month. Then at 5 years old, Roxie was diagnosed with mitochondrial disease that has caused her severe physical and mental disabilities.

Her parents, Phelps and Kate, placed Roxie (pictured above) in a preschool funded by Easter Seals/United Cerebral Palsy. Roxie has since graduated from that school, and is now in Metro School, a CMS school that serves about 200 students with significant cognitive disabilities.

Yet an Easter Seals UCP worker still comes to Roxie's house after school and on weekends to help the child achieve her goals of one day standing, walking, using her voice and her hands.

Phelps and Kate Sprinkle are so appreciative of the agency's help that they've co-chaired the "Walk With Me: StRoll in the Park!" fundraising event in Freedom Park for the past five years.

The next walk is Saturday. You're invited to take part in the 1 to 5Ker around the park's lake. Along the way, you'll meet people who have benefitted from Easter Seals UCP and might learn what it's like to live with disabilities like Roxie's.

"Easter Seals UCP believes that everybody in this world has a place and that no one should be ignored," Phelps Sprinkle said. "Everyone has the ability to contribute to society. It used to be that people who had disabilities were hidden away. Kids would grow up not knowing they had a sibling. It's not that way now.

"Easter Seals is a big player in that effort."

If not for Easter Seals UCP, Roxie probably wouldn't have made the strides she's shown to date. In her own way, she communicates -- she claps for "yes" and rips paper when she hears the shrill sound of a leaf blower or hair dryer.

Her family gets support, too. Her parents meet with parents who have children with disabilities. And because Phelps and Kate can't work with Roxie all the time, the Easter Seals UCP worker comforts them that their daughter is getting the attention she needs.

"We've met an amazing group of people through Easter Seals that we never would have known otherwise," Phelps said. "We swap notes and offer support to each other ... In general, our daughter is really a happy little girl. She's not able to verbalize her thoughts. But through her eyes and verbal sounds, I do think a lot more goes on up there than she's able to let us know.

"I'd hate to think where she'd be without the help from Easter Seals UCP."

Want to go? Registration for the "Walk With Me: StRoll in the Park!" event begins 9 a.m. Saturday, and the walk, stroll or roll begins at 10 a.m. You'll be able to make a donation and meet a walk ambassador.