As Katie plays happily in the corner with her brother Jack and Capital Area Women’s LifeStyle photographer, Mary, her heartwarming laughter fills the room and her smile spans from ear to ear. Like any child, Katie enjoys playtime, her afternoon snack and snuggling with her parents on the couch. Katie also has Down syndrome, but this handicap is only one part of the adorable little blonde and her parents agree that it will not be the part that defines her. “We talked about this before Katie was even born. We agreed we would hold her to the same standards. Just because she has Downs doesn’t mean she is going to get away with things,” said Katie’s dad Scott Truman. “We aren’t going to let her slack on anything. We will make her try as hard as she can.” Because Katie, like most children with Downs, displayed signs of Downs before birth, Katie’s parents, Scott and Jennifer Truman, began looking for answers, support and guidance before she was even born. “When we were pregnant with Katie we knew that she had a hole in her heart, which is related to about 50 percent of Down syndrome cases,” said Jennifer. “She had a heart defect that left a chamber of her heart wide open. At the first ultrasound at 20 weeks they found this and they helped us reach out to a family at CADSA.” The Capital Area Down Syndrome Association (CADSA) was created by parents of children with Down syndrome as a support system. The organization offers emotional support to people with Down syndrome and their families, and provides assistance and guidance in several areas. The CADSA mission is to provide resources, education, advocacy and community awareness for people with Down syndrome and their families in mid-Michigan. The Trumans admit dealing with Katie’s diagnosis wasn’t always easy. There was fear and a certain sense of loneliness that accompanied the news. But since having Katie and becoming an active part of the CADSA community, the Trumans have found, not only the support they need, but have offered support to many other families in return. “There are support groups. They do dads’ night out and moms’ nights. It can be hard. But once you relate to parents who are dealing with the same things, they can share their story and it helps you realize you’re normal, you’re not alone,” Jennifer said. “CADSA is a resource. They provide different education for families and they help people better understand Down syndrome.” Scott serves on the board for CADSA and has big goals for the organization moving forward. “For the organization in general I provide more resources, awareness and advocacy. I hope that we have literature in every doctor’s office soon. I want to raise more awareness, so we can help more families and I want to start a conversation,” Scott said. “When a child with Downs is born today there is no conversation. We want to change that and let people know we exist and that they aren’t alone.” Families of CADSA are truly not alone. With a tightknit member base and growing community support, CADSA has made great strides in bringing awareness to Down syndrome in the greater Lansing area. Hundreds gathered this year, despite the gloomy skies, to support CADSA’s annual Step Up for Down syndrome event. And starting in October CADSA has partnered with local coffee retailer, Biggy, to raise funds to support the organization by selling paper feet at area locations. The Trumans hope that by sharing their story they will help to bring more awareness to Down syndrome and help the public better understand that although every individual with Downs faces their own set of hurdles, all of them deserve support and respect. “It’s nice to have a community that is supportive because it can be hard. It’s the people who stare that really get to me. Just because a child has special needs they act as if they don’t want to be around you,” Jennifer said. “We don’t need the unnecessary sympathy … People tilt their head and say ‘sorry.’ Don’t say sorry because we aren’t sorry.” For more information on how you can support CADSA visit www.cadsa.org today.
Ami Iceman-Hauter is the Brand Manager at M3 Group in downtown Lansing. Iceman is a graduate of Michigan State University with a bachelors degree in creative advertising.