Vittek family featured on Jerry Lewis telethon

Kayla Vittek of Rocklin is the face of myotonic muscular dystrophy, a genetic disease that affects muscles and organs in the body. And on Sept. 6, she let almost 40 million viewers across the U.S. into the life of living with MMD through her family's appearance on the Jerry Lewis MDA Telethon raising funds for the Muscular Dystrophy Association. Vittek, now 4 years old, was diagnosed with MMD at 46 days old. She was born two months early and was immediately placed into the care of doctors after her birth, hooked up to a ventilator, which she used until she was 9 months old. "The doctor said, 'pull her life support,'" Kayla's mom Lisa Vittek remembers. "They didn't think she was going to survive."Lisa and her husband Jeff decided it wasn't the time just yet to give up on Kayla. "She has exceeded all expectations," Lisa said. But it was a tough first two years, Lisa admitted. Kayla was assisted by a feeding and tracheostomy tube until she was 2 years old — about the same time she took her first independent steps. Now Kayla is in her second year of preschool at Rock Creek Elementary School in Rocklin, where she takes speech, occupational and physical therapies in her special education class. Because of Kayla's inspiring story, the Vittek family has been appearing on the local Sacramento showing of the Jerry Lewis MDA Telethon for a few years now. But this year marked the first time Kayla's story has been heard nationally. The family was selected as one of the handful of families across the U.S. to give Americans a glimpse into what living with MMD is like. "I'm honored to introduce Kayla Vittek and her remarkable family," said MDA national chairman Jerry Lewis in a news release. "Their experience with MMD gets at the heart of what a family with one of these diseases goes through and is sure to inspire telethon viewers to join MDA in putting an end to these diseases."The Vitteks boarded a plane for Las Vegas last Friday for the show taping. Included in their videotaped profile was the story of Kayla's diagnosis and how the family copes with the genetic disease. The 21 1/2-hour telethon aired on KQCA, channel 58 with the family also Skyped in from Nevada for the Sacramento broadcast. The family's connection with MDA was immediate. Shortly after Kayla's diagnosis, doctors put the family in contact with MDA, where they were able to connect with others in similar shoes, Lisa said. "The MDA helped navigate when we were just lost," Lisa said. After learning about Kayla, the association invited the Vitteks to be a part of the local broadcast of the national telethon. "'We want you to tell Kayla's story,'" Lisa said MDA representatives told her. Now MDA is a large part of the family's life – they visit local businesses like Lowe's and The Spaghetti Factory when they're holding MDA fundraisers, to thank the employees and businesses for their support. "This is the face of this disease," Lisa tells them. But the way Lisa describes Kayla, she's like many other children her age. "She's absolutely in love with David Archuleta," Lisa said. Kayla also loves to dance and read and participates in weekly Ride to Walk sessions, which provide horseback riding therapy for Kayla. Through everything Kayla has been through, the word "determination" comes to mind when Lisa describes her daughter. "She's so far from where she started," Lisa said. "She just kept fighting these little obstacles."MDA is a nonprofit agency dedicated to finding a cure for muscular dystrophy, ALS and related diseases. Lauren Weber can be reached at laurenw@goldcountrymedia.com.