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Ernie is an inquisitive, witty, and creative 10-year-old boy who was referred to CIDE for a custom seating and wheelchair evaluation. Ernie is unable to sit in a standard chair with an upright back at home or school due to severe contractures throughout his body. When he was not yet one year old, Ernie sustained third-degree burns over 70% of his body. Although he is ambulatory, the extensive scar tissue and skin tightness resulting from his burns have significantly limited the range of motion in his hips and knees, preventing him from sitting upright to use a standard chair.

To compensate, Ernie often sat backward in a rolling office chair with his trunk flexed forward as this was the closest position he could achieve to sitting. This posture limited his ability to fully participate in activities at school and at home. Additionally, his school would be transitioning to a classroom model in which students change rooms between classes, creating further challenges due to Ernie's gait instability.

Ernie was evaluated at CIDE by Jayne Manush, one of the clinic’s occupational therapists, and a wheelchair supplier to explore potential equipment solutions that would allow him to sit more upright and participate more effectively in daily activities. During the evaluation, the team learned that Ernie was scheduled to undergo another scar release surgery in just two months. The surgery was anticipated to improve the range of motion in his hips and knees, although the extent of improvement was unknown. This would significantly impact the sizing, positioning, and overall design of any custom seating system.

Because of the anticipated changes following surgery, the team determined that moving forward with a finalized seating recommendation at that time would not be appropriate. Any equipment prescribed before surgery would likely require substantial modifications afterward, resulting in unnecessary costs and delaying the delivery of an optimal long-term solution. As a result, the team decided to place the custom seating evaluation on hold until Ernie could recover from surgery and be reassessed.

Rather than allowing Ernie to go months without a solution while awaiting surgery and recovery, the wheelchair supplier and CIDE occupational therapist collaborated to develop a temporary option. Using spare demo equipment available in the clinic, they modified a manual wheelchair and seating system to position Ernie as upright as his body would comfortably allow while also allowing him to reach the rear wheels and self-propel. This temporary setup provided him with improved support, participation, and mobility while he awaited his next phase of treatment.

Once Ernie has recovered from surgery, the CIDE team will meet with him again to complete a comprehensive evaluation and determine the most appropriate and long-term equipment that fits properly. Thanks to the resources available through the clinic and the services provided by CIDE, Ernie was able to receive loaner equipment to use in the meantime.

Ernie was thrilled with his new temporary wheelchair. At home, he carefully buckled his stuffed animals into the seating system so they could go for a ride too.

By Jayne Manush

Need help with seating, positioning, or mobility? The CIDE Assistive Technology clinic in Denver offers expert evaluations for children and adults. Email [email protected] or call 303-315-1280 to get started.