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VisionWalk’s Eight-Year-Old Superstar

Sue and John Koth became involved in the Foundation’s VisionWalk fundraising program to drive research that might save their eight-year-old daughter’s vision. Katlin was diagnosed with retinitis pigmentosa (RP) five years ago, and is now completely nightblind and has lost most of her peripheral vision. More recently, doctors discovered that Katlin has conorenal syndrome, a progressive condition which in addition to causing RP, has brought on kidney disease and abnormal bone development, especially in her legs and hands.

The Koth Family

While VisionWalk gives John and Sue hope and a sense empowerment, the event has also been quite a thrill for Katlin. In fact, it has made her into a celebrity. “Being involved in VisionWalk means the world to Katlin,” says Sue. “As the youth chair, she gets to go up to the podium and talk. She gets a goodie bag. She’s like a superstar, and with everything going on, she needs that.”

Sue and John are walk superstars themselves having raised more than $20,000 over the past four years. They push the fundraising bar higher every year and are aiming to bring in at least $10,000 for the 2011 Chicago VisionWalk in June.

Despite the challenges of her condition, Katlin enjoys school, reading, bowling, and riding her bike and scooter. Sue says that her school has done an outstanding job giving Katlin the accommodations she needs to succeed. Katlin’s sisters, Kayla and Addison, are also quick to give support, especially in situations where it is dark. “My other daughters are wonderful about helping Katlin,” says Sue. “They are her eyes at night. They turn the lights on for her. They’ll hold her hand.”

Even Ruby Tuesdays, one of the family’s favorite restaurants, has purchased a special lamp for Katlin to use when she visits.

The Koths have taken Katlin to Dr. Ed Stone, a Foundation-funded clinician-researcher at the University of Iowa, for examinations and genetic testing. “When we walk out of his office, we feel like there is hope,” says Sue. “He is so positive and supportive.”

While in most respects, Katlin is a typical happy kid, she is also keenly aware of being different.
Her mother says, “Katlin is not a complainer. For the most part, she just goes with the flow. And if she can’t see, she’ll take your hand. However, sometimes Katlin will ask why she can’t see when her sisters can. It doesn’t come out often, but when it does, it hits you like a dagger.”

This fall, the Make-a-Wish Foundation is sending the family on a trip to Disney World and the Give Kids the World Village there. Of all the attractions, the 24-hour ice cream parlor is at the top of Katlin’s list.