In June of 2014, we welcomed our daughter Lula June into the world. After experiencing complications in the hospital, doctors found that Lula had brain damage or Schizencephaly, an extremely rare malformation of the brain from an in utero incident that had not been spotted before birth. When we first found out about Lula, we felt unprepared and alone. Even though we were surrounded by loving friends and family, they lacked the expertise that we needed to begin wrapping our heads around what our lives would be like moving forward.
We still do not know what caused the damage in Lula's brain or how greatly it will affect her development. One thing we do know is that Lula has cortical vision impairment (CVI). This is a vision impairment that is caused by damage to the brain, not the eyes. The good news is that the brain is capable of amazing things and improvements in her vision are possible over time with therapy. Lula is receiving wonderful care from her doctors at Children's Mercy Hospital and lots of early intervention thanks to Infant Toddler Services of Johnson County and the Children's Center for the Visually Impaired (CCVI).
We began working with CCVI when Lula was 4 months old. She receives vision therapy, and we have also attended multiple sessions of a water therapy class at their Children's Campus. Every employee and therapist that we have met from CCVI has gone out of their way to get to know Lula and show their support for our family.
About a year ago, my husband went out to lunch with some of his friends and was updating them on Lula and telling them about some of the services that she was receiving. One of his friends went away from that conversation and decided to look into CCVI and their upcoming Trolley Run. In an effort to bring all of our friends together and show some support for our family, he organized a team. We went from there, spreading the word to all of our friends and our co-workers, plus our family and our family’s friends. We ended up with an amazing showing. We had people from all over signing-up and donating to show their support for Lula. It was an awesome opportunity to get everyone together, and by supporting CCVI, everyone was also able to contribute to Lula’s therapy and development. It was an overwhelming and emotional weekend for us, but we can’t wait to do it again this year!
We ask anyone that is participating or thinking about participating in the Trolley Run to remember that it is more than just a run…(or stroll, in our case!) This event directly supports a center that provides so much to kids who struggle to do things that most of us can do without a thought. Early intervention is so important for vision impairments like Lula’s and your support raises awareness and provides funds to ensure that kids like Lula get the best therapy from the best staff in an environment that is best suited to their needs.
Amanda & Zack Arndt