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Saturday, September 3, 2005 Don't feel sorry for me Young girl with Noonan's Syndrome says she is like everyone else By Kerry Hoffschneider staff writer AURORA -- About a week and a half ago, eight-year-old Ryane Niles looked up at her mom and asked her, "Do you feel bad for me?"
Ryane Niles, daughter of Debb and Kirk Niles of Aurora has "Noonan Syndrome." The York Lions, Lioness and Aurora Lions groups are putting on a benefit for Ryane to help defray medical cost of numerous surgeries. The event will take place on Saturday, Sept. 10 at the Aurora Veterans Club from 11 a.m. to 7 p.m. Chicken and biscuits will be served along with pie, relishes and drink. Thrivent will also match funds collected from the event. Anyone wanting to send a donation, mail them to: Mary Crawford at 832 West 4th Street in York. Or call Mary for more information at (402) 362-3219. News Times/Kerry Hoffschneider Reprints available in daily photogallery "I said, 'I do,'" Debb Niles said. "Then I asked her, 'Do you feel bad for you?' She looked at me and said, 'No.'" Debb described her daughter as a "tough child" who has faced her life-long battle with "Noonan's Syndrome," "With such stride and courage." The signs came early on during Debb's pregnancy, but the diagnosis didn't come until two and a half years ago. "Ryane was a difficult pregnancy. I did not feel well at all. I grew very large and at one point in time they thought I was carrying twins. But, on the ultrasound, it was just a lot of fluid. That is another telltale sign of Noonan's because the baby is not breathing the fluid as efficiently as they should be," Debb began. "Her first year, Ryane was a very sick baby. She didn't eat very much and was very weak. She had chronic ear infections. No matter what I tried to do, nothing was working," she said. "And, this was my third child, so I thought I knew what I was doing." Over time, their family physician recommended them to a pediatrician in Grand Island, Dr. Karen Higgins. At four months, Ryane had an intestinal infection because of all the antibiotics she was taking for her ears. "At this age, she was not able to hold up her head and was very, very tiny. . . . At a year old, she only weighed 14 and a half pounds. . . . At her one year birthday she was on finely, pureed baby food. She could not eat her birthday cake. Her normal breathing pattern was a pant and she had started sleeping 20 hours per day because of the terrible sleep apnea. She would bounce back and forth and never get the rest she needed." At 14 months old, Ryane had the first of multiple surgeries. She had her tonsils and adenoids removed and tubes placed in her ears. She started getting better and gaining weight. Then, at 22 months, she began to walk. After surgery, she had started in the early intervention program through the school system in Aurora where she received speech and physical therapy. However, the hospital stays were not over. When Ryane was two and a half, the ear infections started again. Due to the strong antibiotics she was taking, there were also digestive issues that led her to lose a lot of weight. "And, her third birthday was approaching and she was not speaking at all," Debb said. The "malfunctioning" tubes in Ryane's ears were replaced. "I'll never forget the look on her face when we brought her home from surgery." Ryane's first word was "no" at Christmas, right before her third birthday. "Everything was 'no,'" Debb said. "Prior to that, I had been teaching her sign language." After the tubes had been in for three years, Debb said they needed to be taken or replaced. Her right ear had always given her trouble, she added, "And, it took three surgeries just to get the right ear tube replaced." That was two summers ago, and once again Ryane improved. However, this past Christmas Debb said they began to notice more problems with hearing. "That is when we found out she has a conductive hearing loss in her right ear. We got the fourth set of tubes in May and that was surgery number eight. Then, she seemed to do all right," Debb said. In the meantime, inspired by her daughter's struggles, Debb returned to school for nursing. This past summer in class, she brought home an "otoscope," the tool doctors use to look in the ear with. "I had never really looked in her ears before. She had just gotten the tubes a month earlier and I could not see it in her right ear. It was coated with scar tissue," she said. At this point, the Niles were referred to an "Otologist," an ear specialist. "They had to do a CAT scan. The mastoid bone, bone behind the ear in her skull, showed that she had 'mastoiditis.' This is an infection of the mastoid bone. If the air cells in the bone can't breathe then they become infected. Ryane's ear canals are really tiny, so very little air was getting back there so the air cells could not breathe," she said. When the doctor saw the CAT scan results, Debb said it was decided a "mastoidectomy" would be done at the University of Nebraska Medical Center in Omaha. This procedure is where they go in and cut all the way around the back of the ear, fold the ear forward and drill into the mastoid. Then, they can get back there and remove the infected tissue. "When they got in there, they weren't expecting the three, vibrating bones in the ear to be affected too. The 'incus' bone was completely eroded away," she said. During the surgery, they put in a prosthetic spacer and drilled out the ear canal from four millimeters to eight. The surgeons also harvested a piece of cartilage out of the ear to make an ear drum. Two weeks ago on Friday, Aug. 12, Debb and Kirk brought their daughter home. "The plan is in the end of December to go back to the operating room and they will replace the incus bone with a prosthetic one and replace the old ear drum with a new one they made. Our goal for the outcome of the surgery is that she will have most of her hearing restored." On September 10, a benefit will be held in Aurora for Ryane. In the meantime, she continues to go to school and, Debb said, "She doesn't want to be treated different than anybody else."
Wanda
Robinson,
Thank you for your kindness and generous support! * The Noonan Syndrome Support Group, Inc. is a 501 (c)(3) tax exempt, non-profit organization. Contributions are tax-deductible to the extent allowed by law.
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