Luke was a normally developing baby until the age of 5 months when he acquired transverse myelitis, a disorder that leads to inflammation of the spinal cord. For Luke, the disorder left him paralyzed overnight, affecting his arms, hands, trunk, and legs. His family was told that he would not be able to walk and would require a wheelchair for mobility. However, Luke’s Mom would not take “unable” as an outcome. She was determined to do whatever it took to get Luke upright and walking. When she heard about the Kids STEP Study being performed at the University of Florida, she knew she had to get Luke involved. They waited over a year to participate due to Luke’s young age, but as soon as he was old enough, he was enrolled.
Luke participated in the Kids STEP Study, led by Dr. Andrea Behrman and Dr. Dena Howland, for over a year with continuing improvements. He was non-ambulatory since 5 months of age and had never taken a step when he entered the Kids STEP Study and began locomotor training at age 3.5 years. He is now able to independently initiate and take steps with a reverse rolling walker. “Unable” is now “able” and Luke continues to show improvement in both trunk control and walking. Luke can also sit on his own and does not require a brace or arm support to sit independently.
Luke first “became” a baseball player during locomotor training. He learned to swing a baseball bat while on the treadmill during “stand adaptability training”. He hit a pitched ball and ran the bases during “over ground therapy”. Today he is playing baseball with his brother, Blake – what we therapeutically call “community integration”. Luke continues to show improvement with the tremendous support of his family.
When Dr. Behrman, Dr. Howland, and Shelley Trimble (Pediatric Research PT) moved from the University of Florida to the University of Louisville and the Kentucky Spinal Cord Injury Research Center, Luke’s family sought to develop resources for children in Florida to receive locomotor training and activity-based therapies (www.lukesway.org). His family has remained in touch with Drs. Behrman and Howland and Shelley, and Luke even traveled to Louisville in 2013 to participate in the Kentucky Mini-Marathon. He was one of over 20 participants with SCI who walked in the race to raise funds for the Christopher and Dana Reeve Foundation NeuroRecovery Network (www.christopherreeve.org) and assist others to receive locomotor training.
In the summer of 2014 at the age of 7, Luke is returning as a research participant with the Kentucky Spinal Cord Injury Research Center (http://louisville.edu/kscirc) and the University of Louisville Kosair for Kids Center for Pediatric NeuroRecovery (http://louisville.edu/kidskickparalysis; site coming in fall 2014), led by Drs. Behrman and Howland. The Todd Crawford Foundation (TCF)(http://toddcrawfordfoundation.org) raises funds to support SCI research and through these funds, Luke will be supported as the first “Crawford Kid”. The TCF funds provide young children and their families’ additional financial support for participation in annual follow-up research evaluations and booster locomotor training sessions. Luke has paved the way for other children to recover because of his progress in locomotor training, his fund-raising efforts to help other children, and helping us again this year as a research participant to discover and learn how to best advance recovery for children with spinal cord injuries.