Child's birthday provides reason to celebrate Dinner at Ritz Charles seeks to raise awareness of illness affecting child, help pay medical expenses. By Holly VanSlambrook Correspondent CARMEL, Ind. When Rachel McCoige was born March 11, 1997, weighing 3 pounds and suffering serious heart and stomach problems, problems, doctors at St. Vincent's Hospital Hospital in Indianapolis told her parents parents they did not expect her to survive the week. She was diagnosed with Cornelia de Lange Syndrome, a rare birth defect characterized by low birth weight, delayed growth, developmental developmental delays, heart defects, orthopedic orthopedic problems and digestive system system difficulties. "She made it through the first week, and then she made it the next week. It's been like that ever since," said her father, David McCoige. He and his wife, Rhonda, will celebrate Rachel's fifth birthday today today with a dinner at the Ritz Charles in Carmel to raise awareness awareness of the illness. Proceeds from the $75-a-plate $75-a-plate $75-a-plate $75-a-plate $75-a-plate event will help pay the staggering $130,000 they owe for Rachel's periodic periodic hospital care, including her latest emergency admission to Riley Riley Hospital for Children, where she has been for three weeks. Rachel underwent surgery March 4 in Indianapolis to replace a port used for intravenous feedings. feedings. She will have a further examination examination to try to find the cause of lingering pain. "We know she's still in pain because because she's been scratching her face. We think she may be having migraine headaches," said Rhonda McCoige. Dr. Joseph Fitzgerald, Riley's head of pediatric gastroenterology, x, - ; f r -v -v A v v , - ' K T-Js T-Js T-Js ...i-. ...i-. a. ' i 4 o L- L- -' -' ''ft:-- ''ft:-- ''ft:-- 4 if T1 y Kelly Wilkinson staff photo Tender touch: Rhonda McCoige and her daughter, Rachel, have a quiet moment together at Riley Hospital for Children in Indianapolis. Rachel was born with Cornelia de Lange Syndrome, which is characterized by developmental delays and orthopedic problems. She celebrates her fifth birthday this month. ELSEWHERE IN METRO has treated Rachel since she was 3 months old. "I walked into the room and saw her in that infant seat. With one look I knew she was a CdLS baby," he said. A feeding tube had been placed in Rachel's stomach, but she still wasn't tolerating the formula. Fitzgerald eventually placed a tube into Rachel's small intestine that bypasses her stomach entirely. entirely. "We will do everything we possibly possibly can for this wonderful family," he said. When healthy, Rachel spends most of her time laughing and smiling, at home and in her preschool preschool class at Tri-County Tri-County Tri-County Opportunity Opportunity School in Noblesville. A nurse visits three times a week when Rhonda runs errands and spends time with younger son Joseph, Joseph, who will be 3 in April. Expenses for Rachel's care continue continue to mount. A hospital bed to replace the chair she's outgrown, a car seat and a wheelchair, totaling $12,000, are on order. While Rhonda McCoige stayed at Rachel's bedside, friends and family family rallied to help with preparations for the fund-raising fund-raising fund-raising dinner. Neighbor Debbie Hall and Beth Lyons, David McCoige's co-worker co-worker co-worker at F.C. Tucker, gathered auction items. F.C. Tucker employee Brad Donaldson will perform as lead singer with a six-piece six-piece six-piece band named the Classifieds. Sharon Krauter, David McCoige's personal trainer at The Workout Centre in Carmel, plans to run in this year's Indianapolis Life 500 Festival Mini-Marathon Mini-Marathon Mini-Marathon to benefit Rachel. 1 "I have a 3-year-old 3-year-old 3-year-old 3-year-old 3-year-old son who was diagnosed with autism, and my heart was broken. Then I meet this family, and I was totally inspired," she said. But Rhonda McCoige sees herself herself first as a parent, rather than an inspiration. "When you have a child, you do whatever you have to do, making sure you're there when you need to be," she said. Still, sometimes things are tough. If you go. . . WHAT: Rainbows for Rachel, a benefit dinner for the Cornelia de Lange Syndrome Foundation Foundation and CdLS patient Rachel McCoige WHEN: Today; 7 p.m. cocktails cocktails and silent auction, 7:45 p.m. dinner followed by live band and dancing WHERE: Ritz Charles, 12156 N. Meridian St., Carmel RESERVATIONS: $75 per person, $600 per corporate table; table; 1-317-706-0807 1-317-706-0807 1-317-706-0807 1-317-706-0807 1-317-706-0807 1-317-706-0807 1-317-706-0807 For more information about Cornelia de Lange syndrome, contact the foundation at 1-800-753-2357 1-800-753-2357 1-800-753-2357 1-800-753-2357 1-800-753-2357 1-800-753-2357 1-800-753-2357 or at www.cdlsusa.org. "Then we tell ourselves this minute minute will be over in 60 seconds, and then we'll get on to the next one," David McCoige said. "We never asked, Why us?' or wondered if anything was our fault. It's just our job to take good care of Rachel and make her as happy as she can be."