Not a CULP trip – 2017 – Guatemala – Cadet Lieber

This one is kind of a long one, but it’s a good one.  So not every Cadet gets to do some cool Army training each summer.  Until a Cadet is contracted they aren’t eligible for things like CULP and Air Assault school.  Cadet Lieber is a three year scholarship winner, so the Summer after his freshman year he still wasn’t contracted.  Along with helping me, as a junior counselor at New York Boy’s State he also did some incredible work in Central America. Here’s his story about his adventure.

Climbing up a steep winding mountain trail, we took turns carrying a wheel chair and getting sips of water to keep us going in the heat of the Guatemalan jungle. As we came out over a vista between the dense walls of vegetation I looked out over the ever expanding green oasis that ebbed and flowed beneath us. I started thinking about how the family we were going to see got to be in the midst of this every single day. Then my thoughts shifted to the mother carrying her son on her back up this trail with his spastic flailing that was surprisingly strong. We kept pushing up until we reached their small home on the top of the mountain. It was a very rugged combination of concrete, tin roofing and whatever scraps were lying around. As we stepped on the porch, there was Carlitos and his mother waiting for us to arrive.

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Darlene, the first patient to receive a made in Guatemala stander, was not expected to be able to stand or walk. Two years after beginning using our stander this is her standing next to her now unnecessary standing frame with her mother and part of our 2017 team.

Rewind a few months and I was a 17 year old high school student who hadn’t been out the U.S. before and certainly didn’t know anything about treating cerebral palsy(CP). One day my engineering teacher gave me a number and told me to call it so I did and Scott Mitchell was on the other end. Scott was a biomedical engineering student at Dartmouth University and had designed something that was about to change thousands of lives. He had designed a pediatric standing frame for a school project aimed towards providing physical therapy to children with debilitating diseases. The primary one in mind was CP, which affects 1 out of every 1,000 kids globally to the point where they are unable to walk or control most of their muscle functions. In developed countries there are lots of amenities and safety nets that help to not only prevent CP, but also treat it when it occurs. Standing frames are the most common physical therapy treatment for CP. These “standers” as we call them are devices that provide support to the patient by some arrangement of straps and a frame that allow the child to stand upright and bear their own weight, a near impossible task for many patients. As simple as this may sound a stander on the market today can cost in the range of $8,000 not to mention the cost of a session with physical therapists that you should have multiple times a week. If a part on one of these standers breaks, they could be rendered useless or at least dangerous until it’s replaced, which could quite well be never in many rural developing countries. Scott’s design had all of this in mind. Our stander was made from universally available hardware store materials, is extremely simple to use and repair and costs only $50 to produce.

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Our 2015 teams visits a patient in their home in rural Guatemala.

In the summer of 2015 I joined Scott on his approximately two month maiden voyage of the non-profit organization called Stand With Me, now the official name of our group aimed at getting these standers out in the world. Our mission was to travel through Central and South America to check on patients who had received standers already and establish a shop that could produce them in country and get them where they needed to go. When we arrived in Xenacoj, Guatemala we stayed in a small compound next to where our shop was to be established. We were piggy backing of Hope Haven and using part of their facility where they had an established shop similar to ours building wheel chairs. I worked with most of the workers there to make the various jigs and parts that were needed to streamline the construction of our standers and it was an incredible experience to get to work with people who were so different from me. I loved talking to them about their different cultures and learning Spanish in a massive trial by fire brought plenty of laughs. Many of them are in wheel chairs themselves and they took no mercy on the gringos during the lunch break wheel chair basketball games. Within a week or two we had what was a mostly finalized shop other than the changes that would come as we refined the process. The worker that we were hiring to be in our shop once we left was named Kevin and we taught him all that we could about our standing frames and how to make him so by the time we finished the shop our first few standing frames had already been made as practice.

The next phase was to get out and check on our patients who had already received standing frames when they were sent down. This is when the trip really began to get personal. No longer was this just another wood working project, we were seeing the faces and hearing the words of the people we were helping. For many of them we traveled hours by car and walked down trails to find their homes situated in their own corner of the world. We were living out of our van for a couple weeks to see as many as we could. Sometimes all their home would be is a series of wood posts or branches supporting a corrugated roof with cloth dividers for rooms and when we walked in the first thing every family did was offer us a drink or meal. This was more than humbling. If these people had nothing, they would still offer it to us because that’s the way their culture is. I learned a lot in every sense of the word by visiting our patients.

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Part of our 2017 team pulling a late night to test design improvements on our standing frame.

One of our patients, Edison, and his family were Mayan and not only did they speak a Mayan dialect rather than Spanish, but they had a totally separate frame of mind than us. They believed that Edison’s ailments were due to witchcraft gone wrong and that prayers and more witchcraft were the only ways to make him better. This was a first for me. I knew these cultures still existed, but interacting with them was unchartered territory for me. After speaking with them for a while they agreed to try our stander since their methods hadn’t been working. We saw a handful more families many of whom praised us as angels who saved them and their child because since using our stander their child started to be able to feed themselves or focus on an object or even walk a little with their mom’s support. I didn’t think I could be anyone’s hero at 17 years old and I still didn’t really feel like I was, but what we were doing was making a world of difference in the lives of our patients and there families.

This past summer I returned to Guatemala and got to see the entire process after two years of functioning. The standers had changed some, the construction process and distribution was being revised and most importantly many of our patients were getting better. We now have over 600 standing frames with patients in 8 countries on 4 continents and have plans to put a shop and distribution center in the western hemisphere in the near future to increase our production. Getting to take part in this was not only emotionally fulfilling, but I was able to learn a lot that I can apply to my role as an army officer. Starting an organization where our primary area of operation is in a foreign country speaking a foreign language and our responsibility includes organizing efforts on the other side of the world taught me a lot about organizational leadership. We spent a lot of time planning and then during our trip changes had to be made and accounted for constantly due to things like cultural differences, different resources being available in U.S. that weren’t there and timing of different phases. Getting this opportunity to go into a real world situation and make a difference from the time that I was 17 to now and knowing that what I and the rest of this team did is going to have impacts on people’s live years from now is extremely fulfilling. I proved to myself that I am capable of creating change and doing good and I think that is going to carry over into not only my Army career, but the rest of my life.

For more info on Stand With Me and our efforts check out www.Standwithme.org!

We expect Cadet Lieber to have more amazing stories after this summer…stay tuned.

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