This afternoon a dear friend and great man entered eternity, where I trust he has already met our dear Eleanore – Don Dubuque. The story goes, from our website:
“Eleanore’s Project began in the summer of 2003, when the principal of Colegio La Alegría en el Señor in Lima, Peru, wrote Don Dubuque of Polson, Montana about her students’ need for wheelchairs. The school serves approximately 100 students with disabilities ages 3 – 18, from the poorest parts of Lima. Don had already begun raising funds when he approached Tamara (an occupational therapist specializing in wheelchair mobility) for technical advice. Don christened the effort Eleanore’s Project, as a memorial to Tamara’s daughter.”
Eleanore entered eternity in 2001 and Don had never even met her. I got to know Don through my work and we lived in different communities so there was never an opportunity. Yet over time he came to know her (so he told me) and he helped birth Eleanore’s Project in a very real way. I always told him he was the godfather of Eleanore’s Project and it was true. It was through his connections in Peru that we discovered an avenue for our desire to improve the lives of kids like Eleanore, and he created the name for our organization. He traveled to Peru as part of our team in 2004 and 2005, and afterward he continued steadfast and prayerful support behind the scenes. Each time I saw him Don told me that Eleanore and our family were part of his daily prayer life. On Palm Sunday 2009 we shared a wonderful brunch with Don and his lovely wife Ginny, in Polson. We dreamed a bit about whether Don might be able to return to Peru with us one more time – by then he had been living with cancer for 6 years. In his 2009 Christmas card Don wrote us that he felt he was on the last leg of his journey with cancer and he was right.
Less than a week after I returned from our 2010 Peru expedition, Ginny emailed me and I learned that Don was entering his final days here, with the support of his wonderful family and hospice. She asked me to write a bit about the beginning of Eleanore’s Project for Don’s obituary, as it was so special to him. It seems only fitting to honor our dear friend here in the blog as well.
Don with all of us and Milagros, the new owner of Eleanore's wheelchair in 2004
We spent a full morning with the teachers and staff at Corazon de Jesus.
We arose Monday morning in Ilo and went out to find breakfast at a panaderia (bakery) before beginning our day at the special education school. After we ate, Jorge took us to the pier where we had a close-up look at the fishing fleet, as well as great views of pelicans and sea lions who hang out there. We could also see large container ships that are loaded with copper from nearby mines, as well as wine and avocados from the region.
After breakfast we found taxis to accommodate us and our large commode chair; soon we found ourselves at Centro de Educacion Basica Especial Corazon de Jesus where we were warmly welcomed. Julian, Jorge and I met with the parents of students who had received wheelchairs last week, and discussed everything from how the chairs are working for their children to struggles in caring for their kids to their desire for information and training. They were powerful advocates – when one mother said she had been searching online to find a parent group but there was nothing in their area, we pointed out that they already have a group – themselves.
Meanwhile, Sammie, Kate and the OT students were spending time in classrooms, checking on wheelchairs and observing the educational program. Over time, Jorge has learned to provide incremental help when starting work with a school or other program, to see if the information and equipment is well-utilized. If it is, then providing more support is warranted. This is completely compatible with our philosophy, which we also learned through experience.
Finally we met with teachers, and were served a delicious ceviche dish typical of the city, made with fresh fish from the ocean just down the road. That was followed by a full course lunch at 2 PM in the home of a student who had received one of our wheelchairs!
We left well-fed with warm wishes from the parents and school personnel, and climbed on our bus for the journey back to Arequipa. This time we had seats at the very front of the bus (Kate and I actually sat right above the driver). The view ahead of us was great, and the ride much smoother although I still took Dramamine just to be sure. We arrived in Arequipa around 10:30 PM and returned to our hostel/home of the last ten days. It was good to be back, to rest and prepare for our last day in Arequipa before returning home.
We left late Sunday afternoon for a road trip to Ilo, which is considerably south of Arequipa on the coast. It is a port city not far from the border with Chile. Our mission was to visit a special education school there; last week 10 students from the school traveled to Arequipa for our wheelchair clinic. This school has only recently come to the attention of our colleague Jorge, of Equip KIDS. We intended to visit the school for follow-up with the wheelchairs, and meetings with the parents and teachers to get a sense of the school and what sort of supports they need, want and will make use of. In addition to our tool bag, we brought an adaptive commode chair designed for adolescents, for use with some of the teenagers for whom we had provided wheelchairs.
It was our first time doing this kind of bus trip in Peru and I was not sure what to expect. At the bus station our bags were inspected and anything with fruit or almonds in it was confiscated for some reason related to agricultural quarantine. Then we climbed the winding narrow steps to the passenger section of the bus, which was very tall and had us sitting up above the driver. It was an express bus, with comfy seats and TV monitors that showed movies and music videos the whole way. There was even an attendant who came around to give us snacks and drinks if we wanted them.
As we got underway it quickly became obvious that riding on that bus was more like being in a boat on the ocean than in a motor vehicle. As we descended from Arequipa at 8,000 feet above sea level, we followed winding mountain roads with many switchbacks. Too late I realized I really should have taken Dramamine, as the bus swayed back and forth. When we finally arrived at 9:30 p.m., Ilo was a welcome sight.
Our hotel for the night was only a few blocks from the bus station, in easy walking distance. We were conspicuous enough as a group of 7 gringa women with Jorge, but add the plastic wrapped Tumble Forms Carrie Potty and frame we carried along the streets to our lodging and we were a downright spectacle. We turned more than one head as we walked through the square!
Liseth fell in love with the red color of her new wheelchair
Today we saw numerous children who live in Arequipa and were on the list for our clinic, as well as others who were not on the list and came our way through word of mouth or invitation. Since some kids on the original list werer absent for various reasons, other kids who had missed the referral deadline had a second chance at getting a chair. Once the word got out, a couple of children showed up spontaneously, such as Liseth who lives at Clinica San Juan de Dios and has juvenile rheumatoid arthritis. She was in the middle of a play when a social worker got wind of possible extra wheelchairs and she was whisked over to see us, still in her beautiful fancy dress.
Gustavo when he first arrived this morning, in a white plastic wheelchair
Gustavo is 11 years old and has muscular dystrophy. He was on our original list and arrived in the white plastic wheelchair he has been using until today. In the first photo below you can see him sitting with his legs crossed to stabilize himself – after all, he could not reach the foot support anyway. There was also no way for him to reach the wheels to move himself independently. Fast forward an hour or two and you see Gustavo in his new chair, that he quickly began wheeling around our work area. He
Gustavo with his new wheels
learned to negotiate the step at the door to the courtyard after just one practice try with the spotting strap. It was satisfying to see him in a chair that allows him independence, with seating protects his body from the destructive posture he had adopted in the plastic chair. Peru is ranked third in the world for the number of plastic wheelchairs that have been provided in recent years, and we are told that some Peruvians are beginning to organize protests because of the health complications they can cause. Soon another 50,000 will be delivered.
Milagros used her hands to support herself so she could stay upright
The prize for being the most patient while spending the longest time at our clinic today goes to Milagros, a 13 year old girl with spina bifida. She lives with her grandmother and is carried to school every day, where she sits in classroom chair. For the whole school day. Without a break, until it is time to go home. Milagros missed the referral deadline as well – our colleague Jorge met her after the application deadline for this year, but he called and asked her to come in today on the chance that we might have an extra chair for her. And we did – an ultralight chair that is nimble and easy to propel! Milagros has a severe back deformity and so she needed a very special backrest to keep her trunk from collapsing forward and sideways. We created just the right seating
Milagros was excited to head off on her own after spending the whole day with us!
system for her, one that will protect her from developing pressure sores while supporting her trunk (much of the credit goes to Aaron Pierce). It was great to see her sitting with both hands free and even better to see her wheel away ahead of her grandmother! Finally she will be able to move around her school with her classmates instead of sitting in the same place all day.
Tonight we all shared a delicious Peruvian meal together, and celebrated the amazing work of this team over the last two weeks. We have completed wheelchairs for more than 117 children (and a few adults) during this time. In two days eight of us will travel to Ilo to follow-up with the wheelchair recipients and their families from last Monday. But first, tomorrow will bring some well deserved rest!
We had a full but good day with the people who traveled here from Cusco, finishing work around 7 PM. We have been able to meet every postural and mobility need so far, although we often struggle with equipment problems that double or triple the time needed to complete a particular system for a particular child. A major frustration is the condition of some refurbished chairs in our shipment. A wheelchair with the wrong size bearing or hub, a wheel that is out of true, or mismatched parts bolted in place result in hours of extra work and sometimes the chair is completely unusable without extensive repair. Fortunately our team has the skills to recognize these problems and deal with them appropriately. But what if we didn’t, and just sent them out only to break down in a short time?
Stiphe loved it when Laura blew bubbles for him.
Stiphe won our hearts yesterday and there was plenty of time for him to do so because he spent the entire day (about 10 hours) in our clinic. He has cerebral palsy, is incredibly strong and also has sensory motor issues leading to postural/gravitational insecurity. Stiphe became panic stricken several times while begin transferred into a trial wheelchair, and completely lost it when the chair was tilted in space to help position him. It took us a while to figure out what was happening, aided by lots of bubble blowing (which seemed to calm him down) but finally he relaxed into his new chair. By the end of the day he was a transformed boy and even managed to remain somewhat relaxed when he was moved in and out of his chair, instead of becoming stiff as a board.
Today is our last day of formal wheelchair clinics here in Arequipa. Half of our team will leave for home tomorrow, with Julian, Sammie, Kate, the OT students and me remaining here until next week. We will be doing more work with wheelchairs on Monday and Tuesday, so stay tuned!
This morning a large contingent of families with children arrived after a 12 hour overnight bus ride from Cusco. After several years it still amazes me to see parents arrive with children in their arms – sometimes quite large children – in apparently good spirits after such a trip. I must confess that I sometimes compare their attitudes to our American attitudes. Most of us would feel exhausted after a 12 hour car ride with a child, much less a bus ride of that length with children who cannot sit up on their own. No supportive car seats, AC or heat, CD or DVD players for entertainment, just a commitment to travel this long distance to get a wheelchair fit for a special child. They humble me.
Over the last two days we worked with 22 children from Juliaca and Puno. Both cities are close to Lake Titicaca and around 12,000 feet above sea level. They traveled 6 hours or more by overnight bus in order to arrive here in Arequipa by 8 or 9 in the morning. A common thread amongst many of these families is that we are replacing white plastic lawn chair wheelchairs provided to their kids previously. Because the children cannot sit in the chairs they are useless. The families and the professionals working with them have never seen wheelchairs that actually fit properly and are unique to each child or adolescent.
Highlights from Tuesday, the Juliaca group:
Whagner works on finding his balance
Christian and Whagner are two 13 year old boys with muscular dystrophy. Both lost their ability to walk within the last 2 or 3 years, which meant the end of going to school or doing much outside the house. They were carried here by their parents to receive their first wheelchairs. Their facial expressions were priceless as they began to propel themselves around the room. There was still much time to wait while other kids wheelchairs were fitted and both boys tooled around the area enjoying their new freedom. Soon Julian noticed Christian was hanging around the door to the courtyard with a 3″ step. He clearly wanted to go out the door but did not know how to do it, and Julian asked if I would help him with wheelchair skills. I attached a spotting strap to Christian’s chair chair to ensure that he would not fall and injure himself while learning and soon he had mastered backing out the door and down the step safely by shifting his weight forward in the chair while controlling his wheels. Not to be outdone, Whagner wanted to try and he had soon mastered the skill as well. Then we began working on basic “wheelies”, teaching the parents how they can practice at home. These skills will allow the boys more freedom in their home environments.
Our OT students from St. Catherine University are a wonderful group and contribute greatly to our team. They are taking on supervised evaluations and with the assistance of our technicians they carry out many modifications to wheelchairs and seating.
Megan and Hilary hard at work
Highlights from today, the Puno group:
Today we completed our work by 5:15 PM – the earliest stopping point so far. It gave us all a most welcome long evening to eat, rest and relax.
Anderson is a delightful young man who waited much of the day for his turn in the evaluation area. At age 14, he received his first wheelchair and will begin school for the first time. Although he cannot speak Anderson understands well and answers “yes” and “no” questions with facial expressions. His parents were both present with him all day and were excited to start learning about alternative communication strategies with their son.
Anderson listened intently as Dana discussed alternative communication options with him and his parents
Marisol nearly missed her chance to get a wheelchair, when her mother confused the days and missed her appointment yesterday. In the afternoon when she realized the mistake, Marisol’s mother called several times hoping that she could still bring her daughter to our wheelchair clinic from Juliaca. Although the other Juliaca families came yesterday, Marisol’s mother was told to bring her first thing this morning. We were so glad that she did! Marisol is a sweet young lady of 15 who is just beginning to go to school.
Marisol looks on as her mother and grandmother practice folding her wheelchair for the long bus ride home
Marisol proves that it is possible to propel a wheelchair with one arm
Today we worked a long day with 10 children and youth from Ilo, a community on the coast down toward Chile. The group of families traveled four hours by bus to reach us this morning and we finished sometime after 8 PM tonight. Thankfully, our work space was organized and ready to go as we were able to set up the wheelchairs and our workshop last night in the auditorium here at Casa de Avila. We are staying here as well and it is great to have a commute of only a few meters between our rooms, the breakfast room and the place where we work! No more long bus rides in Lima traffic this week.
A busy Sunday afternoon setting up the work space at Casa de Avila
Sarria arrived in a 10 year old chair, given to her when she was 4. It was a poor fit, to say the least.
Sarria’s Story
I began the day working with Sarria, and by the end of the day she and her mother deserved an award for patience. Sarria’s mother really wanted better postural support for her daughter. This required a molded backrest because of her severe scoliosis, that had likely been aggravated by her outgrown and inadequate wheelchair. Aaron, Hilary, Brittany and I began by using some older foam-in-place seating kits left over from an earlier trip (2008). Never one to waste resources, I figured the chemical reaction might be slow but it was worth a try. This approach has worked on other occasions – but not today. At first I thought we were in luck – we created a shape that supported Sarria well in her new tilt-in-space wheelchair. But over the next hour, why did she keep sagging to the side more and more? We added chunks of foam here and there several times until we felt satisfied and finally moved on to make a cover for the backrest. That was when we discovered how soft the foam really was – as in, will this ever truly solidify? Time for a lunch break – maybe it will harden while we eat.
Many hours later, Sarria in her new wheelchair
But there was no such luck and after lunch we decided to start over, this time with a nice fresh foam-in-place kit. Again, a snafu – only part of the chemicals expanded into a foam shape around Sarria’s back, while the other half remained liquid in the bottom of the bag. We threw out the whole mess and started over again, hoping the third try would be the charm – and it was.
As Sarria’s mother (who probably could have done it herself by then) watched we finally succeeded in creating a supportive backrest for her daughter. Sarria sat well, looked great, and in another two hours she was ready to go, her mother was pleased and we were relieved by the final success of her seating
Yeili was full of spunk at the end of the day when she got her new wheels
Yeili’s Story
Yeili is a delightful 8 year old girl who waited almost all day for her turn to be fitted with a wheelchair. She showed a kind heart and a great sense of humor. Yeili had us laughing at the end of the day as she wheeled herself in circles while waiting to have her picture taken. And I felt touched when she volunteered “My back feels so good sitting in this chair”. We wish her the best as she continues in school and enjoys life with her family.
Tonight we all sat out in the beautiful courtyard and ate sandwiches with fresh avocado and delicious mangos – thanks to our energetic students who headed off to the square to go shopping for the supplies. Tomorrow will bring 16 children and youth from Puno and we will have more stories and photos to share.
The first part of the team arrived in Arequipa this afternoon. Kate and the St. Kate’s students will arrive tomorrow around noon.
After the bustle of Lima, Arequipa is a welcome change. Everything seems slower…the traffic is less crowded, the streets feel a little wider, and the cool mountain air is rejuvenating.
Tomorrow will be mostly rest, but once our whole team has assembled again, there will be some preparation for our clinic which will begin on Monday. We have a full week planned – families from Ilo, Puno, Juliaca, Cusco and Arequipa will bring children to us all week long.
As I write this, I’m wrapped up in a hoodie sweatshirt in the beautiful courtyard of Casa de Avila. Our friends Jorge and Sandra are with us and we’re enjoying the lovely, cool night. May you all be as happy where you are as well.
Forgive the 5 days’ silence and lack of posts…I promise, it was not for lack of stories.
When I last wrote, we had just finished the mammoth task of unloading, sorting and labeling our shipment of 194 wheelchairs, 29 boxes and other assorted items. Mother, Sammie and I were exhausted after 2 days of hard work.
The weekend brought time for rest and 5 more members of our team: Laura Miklautsch, a paraeducator from Montana; Aaron Pierce, a wheelchair technician from Colorado; Mary Jo Wagner, an occupational therapist from Massachusetts; Patty McTigue, an assistive technology professional from New Hampshire; Jeff States, a wheelchair technician from Massachusetts; and Shingo Takemoto, a mechanical engineering student from Maryland. It was fantastic to reunite with Laura, an old friend, and to meet Aaron, Mary Jo, Patty, Jeff and Shingo, our new friends and colleagues. Our team of nine conducted the first two days of wheelchair clinics before Kate Barrett and five students from St. Catherine University joined us on Tuesday night.
I can hardly believe it, but we are wrapping up our work at Yancana Huasy this afternoon. Thus far, we have fit 47 wheelchairs for children from Lima and Chimbote, a city about 6 hours (by bus) north.
So much has happened this week, I hardly know how to recount it. Maybe the following snippets will do some justice to it.
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