More kids can look forward to joining in the rough-and-tumble of the playground thanks to generous donations to set up the first locomotor training facility for children with spinal cord injury in Australia.
Three-year-old Talyn Reedy ran, jumped, danced and revelled in a world of make-believe, so when she complained about having sore feet, the last place her parents expected her to end up was in hospital. In what seemed like minutes, Talyn went from being a boisterous youngster to being ventilated in intensive care with no movement from the neck down. It was 15 April last year—the date is seared into the minds of her parents, Emma and Amron,and her older brother, Kaimana.
Talyn was diagnosed with a rare neurological disorder called transverse myelitis, which resulted in a spinal cord injury, and remained in hospital for almost four months. Now four years old, she has regained a lot of function but continues to experience increased spasticity in her legs, so her running, jumping and dancing are a long way from what they used to be. Although her hand function is considered age appropriate, she lacks strength in her fingers, which may affect her writing when she starts school next year. She also has a neurogenic bowel and bladder, requiring intermittent catheterisation every 4 hours.
When spinal cord injury takes away a child’s ability to revel in the playground, it not only diminishes their opportunity to have fun but also interferes with their ability to develop physically, psychologically and socially.
Exercise and play
Spurred on by wanting to give Talyn and other children every opportunity to meet their developmental milestones, Spinal Cord Injuries Australia (SCIA) is preparing to open a children’s exercise clinic.
A first for Australia, the clinic will deliver paediatric locomotor training (LT) that is based on extensive research and clinical experience from the US. The brains behind the US approach are Dr Susan Harkema, Director of the Reeve Foundation NeuroRecovery Network, Professor of Neurosurgery and Rehabilitation at the University of Louisville, and Research Director of the University of Kentucky’s Spinal Cord Research Center and Frazier Rehab Institute; and Dr Andrea Behrman, Associate Professor in Physical Therapy at the University of Florida and Assistant Director at the Reeve Foundation NeuroRecovery Network.
Together Susan and Andrea have developed a three-phase approach to LT: step training using body weight support on a treadmill and manual assistance from therapists to guide the child’s body through a walking motion; over-ground walking training; and community ambulation training.
During the step training, up to four therapists are required: one to steady the child in the harness over the treadmill; two to guide the child’s body through the walking motion; and one to engage the child in play. Play-based activities are integrated into the other phases of LT as well. To reap the most benefit it’s recommended that children participate for oneand-a-half hours per day, five days a week.
The US research shows that sensory information is repetitively sent to the spinal cord during LT. The sensory information comes from the stepping, the therapist guiding the client’s foot through the walking motion, and the sole of the foot making contact with the ground. Basically, this approach assists in rewiring the brain and the spinal cord, which helps to improve movement and function.
This type of early intervention is particularly beneficial because it can significantly improve functional independence after paralysis and decrease the associated health complications and social implications of a spinal cord injury, says Kierre Williams, National Manager Exercise Programs at SCIA. If children don’t weight-bear through their lower limbs as they develop they can experience bone and joint deformities and other complications. “Our bodies are made to move and children love movement. So, what better way to encourage reaching their developmental milestones than by incorporating play and movement with intensive [exercise],” Kierre says.
Although there is already a small number of body weight supported treadmill training programs in Australia, including SCIA’s adapted kids’ Walk On program, none of them provides LT as prescribed by the US researchers and clinicians mentioned above.
Talyn is currently attending SCIA’s adapted program and has made significant improvements. She is now walking intermittently with assistance. She starts school next year, so applications for funding have been made to make the school accessible. These gains have been achieved despite the medical fraternity being unsure about what Talyn’s medical future holds, says her mother, Emma.
Also attending the program is two-and-a-halfyear-old Aiden Sue. He has been coming once a week for one-and-a-half hours since he was 18 months old. He was born with a spinal lipoma, at the T10-S5 level of his spinal cord and has already had two major operations to remove as much of the lipoma as possible.
Since joining the program, he has literally made great strides, progressing from no movement in his right leg and little movement in his left leg to standing unsupported, cruising furniture and walking with assistance. His parents Ray and Pearl also supplement the program with home activities, which include play to encourage standing and walking.
Aiden and Talyn are benefitting significantly from the adapted program, so if they and other children attend the more intense LT retraining, it is predicted that their achievements will be greater.
Spinal Cord Injuries Australia children’s exercise clinic will start post July—once the SCIA exercise physiologists and physiotherapists undergo paediatric-specific training in the US, namely LT Training Principles and Practice in Louisville, Kentucky. The training has been made possible by a generous donation of $55,000 from DOOLEYS Lidcombe Catholic Club. This will cover the training and also fund one staff member for six months to oversee the program when it begins.
Other generous donations for the LT program have come from Mazda, which donated $26,855 for a LiteGait exercise machine to facilitate over-ground walking, and IOOF, which donated $30,000 for other equipment.
No ongoing government funding is available to support the program and participants are not subsidised to undertake the program. However, a grant from NSW Ageing, Disability and Home Care will enable the LT program to get off the ground, as it will fund five children at $10,000 per child.
“We are hopeful that, upon the successes of these children in the program, the government may continue to offer support to other families so their children can also attend the program,” says Kierre.