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From: Des Moines Register Daphne Christensen admits she knew little about the rock band KISS when she won a guitar designed and signed by guitarist PAUL STANLEY. "I thought instantly of the makeup, and you know, rock 'n' roll and crazy stage show," she said. "But that's it." Yet she hopes she can parlay what initially seemed like a random door prize into financing a charity to benefit families who have children with facial birth defects. Her inspiration is her blond, gray-eyed, 2-year-old son, Dylan. The toddler's facial birth defect was diagnosed while in utero. Christensen, who lives with her family in Norwalk, is using their experience to build a nonprofit organization called Dylan's Smile (www.dylanssmile.com). Christensen said the organization's mission is to "instill hope and to foster pride" in families and caretakers facing a situation similar to her family's. All the proceeds from the guitar on eBay will be put toward the approximately $1,200 it will take to get a nonprofit up and running. Christensen said it should take about two months. The deadline is today to bid on the limited edition electric guitar. The starting bid was $1,050. Similar guitars are also up for bid on eBay, so people looking for the one benefitting Dylan's Smile should make sure to enter item number 320093751790. That guitar comes with a full-color collectible carton, including an exclusive autographed photograph, custom gig bag, signature guitar strap and three PAUL STANLEY signature guitar picks. Christensen, 31, was 19 weeks pregnant when an ultrasound revealed that Dylan had a cleft lip. Subsequent ultrasounds showed he had a bilateral cleft lip and cleft palate. A cleft lip is a separation of the two sides of the lip; a cleft palate is an opening in the roof of the mouth where the two sides of the palate did not join together while the fetus was developing in the womb. The clefts can occur on one side of the mouth or both sides, like in Dylan's case. The idea for Dylan's Smile was a seed planted when Christensen first heard the diagnosis. "I was fearful, a little bit angry, but so in love with my child. I had this vision that I would do something with all of those feelings." There was a big hurdle: money. She also was uncertain how to start such an organization and which resources were available. So bringing her vision to fruition was temporarily stalled - until now. Meanwhile, Dylan has grown into an energetic and social little boy, who easily smiles and giggles. He likes chocolate milk, is never without his Hot Wheels cars and John Deere tractors - "He's always got one in each hand," his mom says - and totes around his baby blanket, or "nee-nee." You'll also find him outside catching frogs and bugs, said his dad, Chris Christensen, 38. Dylan lives with his mother, father and brother, Tucker, 4. Daphne Christensen said they're lucky that their son is easygoing. His temperament has helped throughout the seven procedures he has had to endure, she said. The first was at 7 weeks; the final surgery was when he was 14 months. The little boy also had four sets of ear tubes to help with problems that were related to the palate deformity. He was fitted for a special mouthpiece when he was a day old to prepare for the subsequent surgeries, Christensen said. He wore it for 4 months. "It really aligns the clefted segments of the palate and brings them closer together in order to perform the repair," said Dylan's physician, Dr. W. Dale Franks Jr. It also helps achieve "a more pleasing result," he said. He said Dylan will need another surgery when he is 9 or 10 years old, where bone will be harvested from his hip and grafted to the tooth-bearing area of his upper jaw to help unite the right and left sides. In the future, Franks said, he may require simply nothing more than orthodontics, or he may need surgery to align his jaws. In general, about 1 in 1,000 Caucasian births will result in a cleft lip and cleft palate, Franks said. In the Asian and Latino population, the incidence is as high as 1 in 500; in African-Americans, 1 in 2,500. He said there are multiple causes for the deformity, including genetics and a variety of environmental factors when a woman is pregnant. "Most often, we just don't know the exact cause unless there is a relative who also has a deformity," he said. Franks is a plastic surgeon with specialty training in craniofacial and pediatric reconstructive surgery, and he is affiliated with Mercy Medical Center in Des Moines. Christensen said within the last couple of months "it seems like one door after another was opened." She began working with the Foundation Group in Nashville, a consultant firm for nonprofits. Then came the door prize. She won the guitar at a business luncheon of the American Marketing Association's Iowa Chapter. "I'm not much for memorabilia, and I won this door prize and I never win anything," she said. That's when she thought: "This guitar could be exactly what I need. "It seems like everything is falling into place and this is going to really happen." Christensen hopes the Web site will be a comfortable place where families can gather to share their experiences and tips on topics such as feeding, surgery and treatment. "I really want to promote the fact that we have a network of families and we can help each other, and we're right here in Iowa," she said. She also wants to raise money for other families with insurance plans that won't cover certain treatments. It was a financial challenge the Christensens dealt with when their insurance company deemed the $6,000 special mouthpiece Dylan needed as "cosmetic," Christensen said. They paid out-of-pocket for the cost. "Dylan is doing wonderful," Christensen said. "He does have scars; he will always have scars. "He goes to speech therapy, but that's more of a precautionary measure to stay on top of his speech as he develops." Christensen said Dylan's speech therapist said he was the best-sounding child with a cleft palate she has heard. Lauretta Smith, Dylan's child care provider, said he fits right in with his peers at the Mercy Child Development Center. "The other children, they don't even notice anything," Smith said of Dylan's birth defect. "Nobody has ever said anything or gave him looks or anything like that." Developmentally, he's talking a lot and is eager and enthusiastic when it comes to trying new things, she said. Dylan loves to run, play with toy cars and Play-Doh, and chatter about his dog, Louie. "He's so cute," Smith said. "I call him Dilly Bar ... because he's so sweet." |
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