Day 20: Outage
This morning, we scrambled to get to work during a power outage. After about an hour of good work, the lights and the internet suddenly stopped working. A few minutes later, Mark and a few factory workers found a yet-unused diesel generator to power a few necessary things, like our internet router, of course. We spent the morning working as best we could with the sparse internet and shaky power to the workshop. Scott and Riley figured the power outage was a good opportunity to go out and buy more parts. They found yoga mat foam and velcro straps for cheaper than we’d been buying them, even further reducing the cost of materials of our stander!
The power came back in the afternoon, so we resumed all our work at full tilt until dinner time. Trey, Emily, and Thomas continued to brainstorm and write for grants while Emory, Riley, and Scott worked with Eric in the shop. They spent time working with our new molds and finalizing the stander design for the last time, at least for this trip. Around six o’clock, we headed to Xenacoj to explore the town during the Feria. It seems that there are ten times as many shops and stands as any other week! We enjoyed a few great gringas and churros for dinner before heading back in a camioneta, a Toyota pickup truck with some railing in the bed for passengers to hold on to. We continued to work on grants and the final price of our design before heading to sleep.
Day 19: Santiago Part 2
Today, we split up for the last time. The families we visited today were much farther, so we got an early start. Riley, Emily, and Ilse traveled to San Pedro to visit our standers. They left the earliest this morning, as they had to travel by boat across the lake. Their first launch was at 7 o'clock this morning. In total, they took six boats to get to their families! They visited two kids today with standers. Jesse, Trey, and Scott visited five patients in San Lucas. They traveled with Hector, a physical therapist from Adisa. Emory, Thomas, and Eric saw three families with standers with Anelvy, another physical therapist from Adisa. They drove about an hour and a half away to Patulul, a small town south of Atitlan. The last girl they followed-up with outgrew our stander and now uses one her parents had designed to address her specific needs! She’s improved a lot over the past two years, as now she can stand on her own and even take a few steps!
After convening for lunch, we got back on the road to head back to Hope Haven. Upon arrival, we realized we locked our keys to the kitchen inside the kitchen when we left. Emory, Riley, and Emily were working on breaking in when we realized there was another copy of the keys in the factory. At that point, though, Emory had already gotten to the fridge. Thankfully, we were all able to get some food before we went to sleep.
Day 18: Santiago
Early this morning, the SWM team, Eric and Ilse piled into our van. Today and tomorrow we’re going to be visiting more patients near Lake Atitlan. Our base is in Santiago Atitlan at the Adisa center, where we met Andrea, Jesse, and Karen. Andrea is a physical therapist, Jesse is a recent graduate who’ll be working with Adisa for the next year, and Karen is studying to become a certified physical therapist. Today, we split up again. Three groups spread out over Santiago to visit patients, each with two or three team members and including one physical therapist. Riley, Emily, and Ilse visited three patients; Emory, Eric, Andrea and Thomas visited four; while Scott, Trey, Jesse, and Karen visited three families.
Several of the families we met were only Mayan speakers. In Santiago, the local language is Tz'utujil. The langauge itself is fascinating, it sounded completely different than any other language any of the team had heard. It uses a variety of clicks and guttural sounds, unlike any languages we speak and even different from the Mayan language common in Xenacoj, Kaqchikel.
After meeting together for dinner, we visited the center of Santiago. Tonight was the last night of the Feria, a celebration for the patron saint of the town. We Visited several street vendors and played foosball with some local boys. Eric and Riley proved to be a formidable duo, but Thomas and Manuel, a boy from Santiago, held their own. We met with Jesse at the concert in the main square before heading back to our hotel.
Day 17: Splitting Up
Our plan for today was to split up. Three of us went to see patients, while the other three stayed in the workshop and finished our plans for new CNC router molds.
Emily, Riley, and Thomas traveled to Fundabiem Escuintla to meet with several families with standers. They traveled with Sergio to follow-up with seven kids. The first family we met with received their stander about four months ago. Jaury is only three and a half years old and has mild cerebral palsy. Before starting therapy with our standing frame, his legs couldn't bear his own weight even with support from his mother. Now, he's able to walk with a little help and can stand on his own! Our stander is a great fit for Jaury as he's able to use it for upwards of two hours a day! He really enjoys his time in the standing frame, which is when he gets to play with his favorite toys and interact with his mother and siblings more easily. Sergio was able to get pertinent information from each patient, which will help us track their progress over the next few years.
Back at Hope Haven, Emory, Trey and Scott traveled to San Lucas to finally get our updated molds done. They found a CNC shop nearby that could make every change we needed! They asked for a great price and should be able to finish the molds within the next few days. The updates to our design should allow Eric to build standers even more efficiently.
To celebrate a successful day, we baked another batch of brownies before heading to sleep.
Day 16: Pacaya
Our mandate for this Sunday was to conquer Pacaya, one of three active volcanoes in Guatemala. We arrived at the base around mid-morning where we met our guide, Roberto. He took us all the way up to the first peak along the trail at the edge of the treeline. From there, we could see the barren landscape that resulted from the eruption in 2010. Roberto told us about the thundering cascade of rocks and lava that he saw that day. The people had to evacuate their homes and leave their fields. For two years, farmers couldn't plant their crops under the mountain. Now, the fields are strengthened by the minerals that the lava deposited in the soil and the local corn, bean, and coffee harvests are back to normal.
Just below the first peak were several tunnels carved into the igneous rock. The black volcanic rock formed a three-meter-tall opening in the ground, nearly 25 meters deep! The team traveled to the end, facing the darkness head-on. The second tunnel was much taller, nearly five meters high with a few openings in the ceiling. At the far end, there was a smaller opening just the right size to climb through. Scott, Trey, and Riley flung themselves through the fissure. Next, Roberto brought us to a natural oven! We came prepared with hot-dogs and marshmallows and enjoyed our lunch, cooked over flowing lava. After our lunch break, we began our descent. Spearheaded by Roberto, our group swiftly made its way down the mountain. Incredibly, as we passed another group ascending the volcano, Emily was recognized by an acquaintance of hers! She’d worked with him in New York City, and he happened to be climbing Pacaya just as we were passing by and spotted her in the crowd.
Back at the factory, we finished Hercules and got plenty of rest to recover from our long morning.
Day 15: Antigua
We expected and planned to visit Antigua today, although we hadn’t figured out how to get there. Yesterday, we decided that would be a problem for this morning.
Somehow, Scott managed to convince Mark, who runs Hope Haven here in Guatemala, to bring us to Antigua early this morning. We were all roused unexpectedly and packed into Mark’s van. On our way, we stopped at a shop to see if there were any interesting cowboy boots. Emily bought a pair of handmade leather shoes, built right in the back of the shop from locally-sourced leather. We made our way into central Antigua a few minutes later, parking just outside a huge open market filled with more handmade goods. Mark brought us to his favorite local joint, Toko Baru. We ate a mixture of Indonesian, Mediterranean, and Central American dishes at a restaurant run by a Dutch man. We shared our most interesting stories with Mark, who enraptured us all with his own accounts of his youth. Our next stop was a hike above the city. Mark brought us up to an overlook of Antigua and even gave us all an in-depth history lesson about Central America and its history in Antigua.
Mark ended his morning chaperoning shift and dropped us off in central Antigua. We waited out the rain in a small restaurant. After waiting much too long, we decided to venture into the town square. Within about 15 minutes of leaving the safety of the restaurant, the downpour began. We found refuge in a nearby Wendy’s for the duration of the rain. Next, we picked up a quick dinner before catching a ride on some chicken buses, the local public transport. The buses got us near the factory quickly, but we did have to walk the last mile home. Back at the factory, we only managed to watch half of Disney’s Hercules before we absolutely had to get to bed.
Day 14: Return
Today was mostly a travel day. We only met with one patient, Amy, whose family was familiar with our frame. The therapists from Adisa were able to fill out our follow-up form on their own thanks to Sergio’s instruction yesterday. Amy’s mother usually used the stander with Amy, so we decided to teach two other members of her family how to properly stand Amy in the frame. We allowed the Adisa therapists to handle most of this visit, and they showed that they understand exactly what information they need to successfully follow-up with a standing frame user.
After meeting Amy’s family, we set out for Xenacoj. Around four hours into our six hour drive, Scott and Riley ventured into the Guatemala City traffic and managed to snag several Subway sandwiches for everyone. We made it back safely and quickly headed to sleep.
Day 13: Follow-up: Act II
After a comfortable rest at Casa Myrna, we made our way over to Adisa Jocotán at 8:00. We met with each family that came to follow-up in phases. First, the parents would meet with Sergio and a few Adisa physical therapists who were learning how to apply our standardized follow-up forms. Next, they met with Riley and Emory who taught a second group of physical therapists how to properly place and remove a child into and from the standing frame, emphasizing certain things like unfolding the stander so that it lays flat on the ground. Afterward, Emily and Thomas conducted a few short interviews to find out what the stander has meant for each family and how it has improved their child’s daily life.
The last patient we saw today was Alan, who received one of our standing frames about two years ago when Scott, Riley, and Emily traveled to his home. Emily and Thomas interviewed Alan's mother after checking up on his stander, and she demonstrated her deepest gratitude for the change our frame has affected in her family’s daily life. While Alan hasn’t improved as much as other patients due to his specific condition, the frame has relieved his family of a lot of stress. With the frame, Alan is able to comfortably be on his own for more than just a few minutes, providing much-needed respite for his hard-working mother. Before the frame, in order to keep an eye on Alan, she rarely was able to leave the house, but now she’s able to leave him with his favorite toys, especially his radio, and take the time she needs to herself as his caretaker. Alan's most notable improvement, in fact, is his ability to handle objects. He now has several favorite toys and is more attentive, specifically when listening to his favorite songs on the radio.
After a long morning meeting with patients, we took a swim in some springs to relax. The team, including Sergio and Eric, unwound in the natural hot springs before heading back to Casa Myrna for dinner and rest.
Day 12: Chiquimula
We began today with an early breakfast. Today was our last morning with Scott Sr. and Jan, who will fly back home to Maine tomorrow afternoon. We said our goodbyes before loading our belongings and bodies into the van. We greatly appreciate all the work and support Mr. and Mrs. Mitchell have put into Stand With Me these past two weeks. Around 7:30, we set out for Chiquimula with Sergio and Eric. We arrived at our destination at 2:30, picking up two Adisa workers along the way.
In Chiquimula, we met with three families in a classroom just down the road from Adisa Chiquimula's physical therapy center. Oskar, Manuel, and Angel brought their standers with them. Despite being almost two years old, all three standers were in excellent condition. Emily, Thomas, and Trey met with each family to discuss their child's progress and story. All three children improved in mobility and strength, now able to crawl on their own, draw, and feed themselves while in the stander. Sergio and the therapists from Adisa used our new standardized forms to gather more information about each child's improvement, experience with our stander, and goals for future treatment.
We traveled to Jocotán and posted up in a local hotel. After telling a few supposedly-scary stories on the roof, we headed to bed to rest before a busy day following up with more families.
Day 11: Follow-up
Some of the team was anxious to get started today, so Emory and Riley ran a workout session with Scott and Emily joining them. They got out on the roof at 5:45 and met with the rest of the team for breakfast about an hour later. This morning, Scott and Scott Sr. met with Hope Haven to better outline and define the relationship between Stand With Me and Hope Haven, streamlining the sharing of resources and materials between organizations. The rest of the team worked on finding and applying for grants. We contacted several other organizations involved in funding medical non-profits like Stand With Me. Intermittently, we worked on creating modifications to the stander and the template we’re currently using in order to make our construction process even more efficient.
Around two o’clock this afternoon, we visited two patients’ homes to follow up with our standers. Our first visit was to Darline, Stand With Me’s first recipient of a standing frame in Guatemala. She demonstrated incredible progress, obliterating her original prognosis. Two years ago, no physical therapist who saw her believed she’d ever be able to walk. Today, she was able to walk with barely any help. She’s been able to help her mother around the house, as she can stand on her own with minimal support. She improved from a 5 on the Gross Motor Function Classification System to a 3! The picture below describes each level of the GMFCS. Her therapy has been a huge success, and we think she’ll be able to make great use of a walker to further improve her mobility. Our second visit was to José. We were checking up on him to make sure he was on track with the therapy he required before beginning to use our stander, and he should be able to start this Thursday! We're excited to hear back from José and his family to learn about his progress.
After some late-night preparation, we turned in to rest before our day of travel tomorrow. We'll be in Chiquimula until Friday evening, visiting patients and families.
This blog is a daily story of our team activities around the world.