Meet Marshall!
Marshall is an incredible boy who has defied so many odds in his young life already and plans to break many more barriers through the years. We have the pleasure of knowing Marshall through our Pediatric VIEW program, which cares for children who have been diagnosed with cortical visual impairment (CVI). With the love and support of his mother, Laura, and his family, Marshall lives a very full and beautiful life. He suffers from several medical issues that many medical professionals had told Laura would limit the things that Marshall can do. Laura does not see those limits for her son. Her and Marshall have pushed those limits to places people never thought possible. Today, Marshall is thriving. He plays in a Miracle baseball league and with his adaptive language devices he is able to participate in school, rides on an adaptive bicycle, has played soccer, rides horses and has enjoyed waterskiing. Marshall had to conquer many hurdles prior to the fulfilling life that he has today.
Although his infancy was extremely challenging as he was faced with the medical complications of low birth weight, surgery to correct a complex cyanotic congenital heart defect that was complicated by a subdural hemorrhage, a genetic condition, cerebral palsy, seizures, a diaphragmatic hernia, and chronic lung disease—he continued to persevere and thrive despite the predictions of his physicians. Marshall was diagnosed with hearing loss at 12 months of age and cortical visual impairment (CVI) at 18 months of age. Not knowing how much he could see or hear, Marshall’s family hugged him close, read to him and sang to him.
As an infant and toddler Marshall experienced many visual behaviors that are consistent with CVI. He did not look directly into the eyes of his family members when they spoke to him. He seemed to look past them. Marshall’s family referred to this as the “side long glance”. He appeared to notice movements in his periphery at greater distances more than what was directly in front of him. Although Marshall did not recognize his family members by their faces early on, he relied on a combination of their voices, greeting styles and mannerisms to identify his mother, father and siblings. The first individual that he looked directly into their eyes was the family dog, Daisy. In that moment, he reached out to pull her face closer and he still does this with Daisy to this day.
Laura’s understanding of cortical visual impairment was initially limited to a very simple statement at 18 months of age. Laura was told that Marshall’s brain did not process what his eyes should see. They didn’t know that Marshall’s functional use of vision had the potential and the expectation of improving, with the right adaptations in place. The sooner a child with CVI is able to get the interventions they need to improve their functional vision, the better. The brain’s plasticity is greatest at a young age and is able to retain more of the critical tools taught in a specialized program such as Pediatric VIEW for children with CVI. One month after this diagnosis, he had a postoperative subdural hemorrhage following heart surgery. At this time, Marshall’s parent’s world was transiently turned upside down.
In April 2019, Laura was blessed to meet Dr. Christine Roman-Lantzy at a conference centered on AAC. It was during a coffee break that Christine graciously met with Laura and answered so many of her questions about CVI and introduce Laura to a CVI Parent Tele-support Group and the Pediatric VIEW. “It was that meeting that I began to understand the challenges that Marshall faced as a child with CVI.” Laura explained. “Overwhelmed by all that we did not understand, had not done and needed to do, I joined the weekly CVI Parent Tele-support Group, and enrolled in courses for the Blind that were taught by Dr. Roman and her associates.”
Marshall has blossomed by sharing in experiences that are also enjoyed by his siblings. He has played soccer with Abby Wambach and held her gold medal. He enjoys riding horses. He loves snow skiing through Eagle Mount Skiing, waterskiing through the San Antonio Sports Foundation. Both organizations have adaptive skis for him to use. He also has participated in adapted surfing through Life Rolls On. His KidWalk gate trainer has enabled him to have upright mobility and to go ice skating, participate in Upward Basketball and Miracle League baseball and play in the waterpark. The KidWalk provides him with independence and freedom that he does not have in a wheelchair. This summer Marshall will have the honor of being 1 out of 10 children who was selected for the Bridge School program for children with CVI. Marshall’s story is a story of determination and perseverance.
If you would like to help children like Marshall receive the care that they need through services provided by The Children’s Home of Pittsburgh and Lemieux Family Center, please consider making a donation today by clicking the link below.