Stand With Me: Designing a Therapeutic Standing Device for Children in Need

uvmmedicine blogger Scott Mitchell II '20
uvmmedicine blogger Scott Mitchell II ’20

For children with physical challenges or special mobility needs, a standing frame can be life-changing both physically and socially. These devices help children participate in daily activities – like eating dinner with family members – that may have been impossible without physical support allowing them to remain upright. The weight-bearing exercises the therapeutic frames allow often help to improve physical function, changing the quality of a child’s life over time.

As a long-term volunteer interpreter with Medical Ministry International in Peru, Ecuador and the Dominican Republic, Scott Mitchell ’20 met many children – some of whom suffered from cerebral palsy or severe scoliosis – who could benefit from a pediatric stander, but lacked the resources to purchase one. So, he founded a non-profit, called Stand With Me, to tackle that challenge. Buoyed support from his colleges (Bowdoin and Dartmouth), family and peers, Scott assembled a team to design a simple, inexpensive wooden standing frame constructed from universally available parts, and then set about building partnerships with physical therapists and healthcare providers around the world to reach children in need. The program has rapidly grown in size and scope: Since 2014, Stand With Me has provided more than 600 frames to children in Guatemala, Peru, Honduras, Vietnam, Belize, Zambia, China and even North Korea. A workshop facility in Xenacoj, Guatemala – managed in cooperation with Hope Haven International – is set to produce over 300 frames annually.

This past summer, Mitchell and his team – including Dr. Susan Cheff, a family medicine physician from Old Town, Maine; Emily Donaldson, a law student at Vermont Law School; Riley and Emory Lieber, students at Clarkson University and Virginia Military Institute; Trey Walsh and Thomas Fitzgerald, interns in medical engineering, journalism and Spanish language; and Scott’s parents, Scott and Jan Mitchell – visited Guatemala for 20 days to implement updates to the new production workshop, distribute frames, and follow-up with families who have been impacted by their work. They also hosted a conference for 30 physical therapists from across Guatemala to learn more about how to obtain and properly use the frames. The following are excerpts from the Stand With Me organization’s blog about this summer’s trip, as well as one of the organization’s first success stories.

Day 4: First Delivery
July 18, 2017

The team assembles pediatric standers in Guatemala.
The team assembles pediatric standers in Guatemala.

This morning the team participated in their first delivery to standing frame users. Twelve families arrived to pick up their frames, and each child was fit into their device by our team and Hope Haven’s physical therapists. We began to fit patients at around 8:30 this morning and were busy with them until around 1 o’clock. Some families traveled as much as 12 hours to pick up their standing frame! Throughout the fitting process and until about four o’clock, Dr. Cheff, Jan, and Thomas continued to manage the open clinic. They treated 26 patients today, more than double yesterday’s count! The patients included residents of Xenacoj and families who came to pick up their standers.

In the workshop, the team is finalizing the manual. They’re working on gathering photos of each part of the construction, assembly, and usage of the stander. In the process of documenting each part that makes up the stander, the team found new parts from local vendors at less than half the cost that we previously paid! We’re making strides in reducing the cost of the stander, which will make it easier for us to reach more and more children in need.

Day 5: Delivery, Act II
July 19, 2017
Today was our last official day of our clinic. Dr. Cheff, Thomas, and Jan attended to about 20 patients today. Some of the patients were families receiving standers, of which there were eight today. The clinic ran efficiently, with each team member having a specific task. Dr. Cheff and Thomas sat with patients to diagnose and treat them. Thomas used his Spanish-speaking skills to translate for Dr. Cheff, who used her 28-years’ medical experience running a family clinic in Oldtown, Maine to treat each of our patients. Jan interacted with and managed the patients in the waiting room. As they arrived, she would take down their name and place them in line to see Dr. Cheff. Jan’s Spanish-speaking ability has improved dramatically by speaking with incoming patients; she went from only being able to say a few words to carrying a basic conversation in just three days! Dr. Cheff and Thomas worked together to effectively communicate with, diagnose, and treat every patient. Their ailments ranged from simple, musculoskeletal pain caused by hard work to respiratory issues in children who would receive standing frames. The clinic was a great success, as we were able to help over 50 people by providing pertinent information and treatment…

…Tomorrow, we’ll be hosting a conference for nearly 40 physical therapists who receive and give out our standing frames. Emory, Thomas, and Trey were in the workshop late, brainstorming case-by-case modifications that families or therapists could make to the standers. Scott and Riley joined them for some late-night preparation to ensure that the morning goes as smoothly as possible.

Day 6: Conference
July 20, 2017

Our late-night preparation paid off. Today we held our conference with 33 physical therapists to teach them how to properly use our standing frame. Scott kicked off the meeting by introducing the Stand With Me team and its history and explaining the goals of our convention. Next, Dr. Cheff, with Thomas translating, outlined cerebral palsy, the complications it can bring forth, and the main treatment goals that physical therapists should aim for. Her concise explanation helped some of the less-experienced physical therapists and health workers better understand how children with CP are affected by it.

Stand With Me production facility in Guatemala
Stand With Me production facility in Guatemala

Next, Sergio, a Hope Haven physical therapist, went over the standers themselves. He discussed the three different types of standers, their usage and treatment applications. After Sergio, Patricia Duff, our guest speaker, spoke about the psychological effects and benefits of therapeutic devices like our pediatric standing frame. She explored the need for effective communication in children who can’t speak or write, stressing that they need a voice as well. In her presentation, she described several ways to communicate with children who can’t speak or write, such as tracking their eyes to interpret responses to questions or using printed pictures to allow the child to formulate ideas and basic sentences. Ilse gave her presentation next, describing the treatment plan for a patient in a stander and how to apply to receive a stander from Stand With Me. By 4 o’clock, all four frames had been delivered and every therapist had been given their certificate of completion of our training course. To celebrate a successful day, the team traveled to Xenacoj one last time before they would depart for the weekend. They met some locals who were associated with Hope Haven in their former work and tried even more delicious local food. An early turn-in compensated for last night’s late-night preparations, but the success of the day was well worth it.

Story of Darlene
While establishing the Guatemalan production facility in 2015, Darlene was the first patient we fit with a standing frame. We met Darlene through two Hope Haven volunteers, Sam and Annie. At that time, she had used a Hope Haven wheelchair for two years, but still could only sit upright with great difficulty and had never performed any type of weight bearing exercise. Darlene’s mother, Dalia, spent two hours by foot, bus and taxi every Monday to take Darlene to physical therapy, carrying her the entire time and spending hard earned money. After receiving the standing frame, Darlene began using it and the attachable tray table so that she could do occupational exercises every day in her own home. This included tasks like practicing how to use a fork, feed herself and play with toys! Two years later, we visited Darlene and Dalia to see how the frame was working and if it had helped. The progress she had made in just two years was very significant. Darlene is now able to stand independently, stand and play with her favorite toys and water in the sink, and even walk with her family by holding hands. She is one of many of our many success stories and the one of the first children who graduated from standing frame. Darlene demonstrates how our standing frame, combined with the hard work and determination of therapists and families, can unlock so much potential for these children.

Darlene receiving physical and occupational therapy using the standing frame for the first time in 2015:

Darlene, a Stand with Me participant in Guatemala

Then in 2017, Darlene resolutely standing next to her standing frame, showing how far she has come and how far she has yet to go:

Darlene, a Stand with Me participant

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