We are back again with Open Bionics’ month-long appreciation campaign for Shriners Children’s, where special recognition is given to the meaningful efforts and devotion to children by every Shriners team member to change lives. We’ve spent time learning about the history of the Shriners fraternity from humble beginnings, dived into all things Lexington, met Aubrey, took a trip to Twin Cities, now it’s time to take another unique look at a Hero Arm power user from the Twin Cities clinic to find out about their experience, care received, and how they’re thriving with their Hero Arm.
Sarah Garbe, 14 years old, from Iowa, was born without her left arm below the elbow, which is what’s known as congenital amputation. In her spare time, Sarah has multiple passions including listening to music, playing instruments, watching television shows with her mom like Breaking Bad, and has about 4 years of soccer experience. Through doing what every other teen does at her age, Sarah is a reminder that disability is not a measure of ability and that living an adaptive life only drives her further.
Despite being born missing her left arm, Sarah’s mom Susan explained that her journey with Shriners Children’s didn’t get underway until she was about 3 years old. When they did learn about Shriners, Susan explained that they were told Sarah would be a great candidate for referral to the Twin Cities facility. From there, Sarah came to know and expect quality care from the entire team.
“I’ve had a great experience with Shriners Twin Cities, everyone is super nice and there’s not a negative thing they’ve done.” Sarah shared. Furthermore, Sarah also explained that she came to find out about Camp Un-Limb-ited at the Shriners Salt Lake City facility, a summer and winter camp that brings teen amputees together for a week of activities and bonding opportunities. Sarah attended summer camp in 2022 and looks forward to going to winter camp as well.
Sarah started using a prosthesis when she was in kindergarten but shared that it wasn’t the best experience for her, having been a body powered prosthesis that uses a harness worn over the shoulder to open and close a hook or pincher. “I really didn’t like it, it would rub on my shoulder causing discomfort.” Sarah explained. In addition, Sarah was fitted with a stationary prosthesis that offers no real mobility that she used to rest on the handlebar of a bike to learn balance to ride it successfully.
Over time, Sarah learned about Open Bionics through social media. After doing her research, she told her parents about Open Bionics and the Hero Arm, a 3D printed myoelectric prosthesis with 6 grips and interchangeable custom covers. The design and how the hand moved excited Sarah, who had never seen a prosthesis move like the Hero Arm before.
“I told my mom and dad: hey this is cool, you should get it for me.” Sarah said. “We ended up seeing Becky with Shriners Twin City to get measurements and find where the sensors would go on my arm.” Sarah. To gain full control of the Hero Arm, Sarah was also given the opportunity to utilize the Hero Arm trial kit as well as go through occupational therapy with the Shriners Twin Cities clinicians, where her control of the Hero Arm function and grips were tested and improved upon.
“My favorite part about using my Hero Arm is using it for video games, we have a VR headset and I can use the pinch grip to push the triggers on the controller.” Susan reflected on the care that Shriners Twin Cities provided for Sarah. “They were amazing.’ she said. “Even when we were traveling there during Covid, we got discounts for hotels if we needed to stay for a long time.” Sarah added.
Sarah will continue to receive care through Shriners until she turns 21, where the team of clinicians will be ready to assist her Hero Arm journey as she grows. Open Bionics is extremely appreciative of Shriners Children’s Twin Cities for giving Sarah and her family continued support as well as the opportunity to use the Hero Arm to live an adaptive life. To learn more about Shriners Children’s Twin Cities, visit www.shrinerschildrens.org/en/locations/twin-cities. To register interest in a Hero Arm, head over to www.openbionics.com/get-a-hero-arm/ to learn more.