The Most Rewarding Experience Ever…

For almost ten days this past January, I had the chance of working with Elon’s iMedia group. I had no clue what to expect when I signed up for this independent study, but I’m really glad I did.

Angie

We worked really hard, and we’re working hard, for an NGO in Panama that helps kids with OI (go see the website @ oipanama.org). This experience changed my life. As an undergraduate, I had no clue what I wanted to do with my life post-graduation. I always figured I had plenty of time to find out. With this project, I got to know myself a lot, and realized how much I want to work with an NGO post-graduation and help with their communication needs.

Setting Up For An Interview

I also had the opportunity of working with a great group of people. The iMedia group is an excellent group of young people that taught me a lot. I’m really thankful I had the chance to meet them and work with them, as well as every one that helped us in Panama from the Foundation.

– Mari Vicky L.

Seeing a country through inspiring eyes

By Brook Corwin

I arrived home from Panama last week, touching down in a sparse and quiet terminal at RDU with shops closed and staff off-duty. Already I miss Panama’s scenery, its warm weather, its delicious food, diverse culture, unique history and collage of breathtaking sights.
But most of all, I miss its people.
That’s highly unusual for the typical trip. Most travelers only interact with service workers when abroad. But this trip was special, one defined not by what places were visited but by who was met along the way.

I’ll never forget the compelling stories of the children, adults and families who didn’t give up on life even when faced with the enormous physical setbacks of OI. They have a disease where the most basic structure of the body is prone to break, living in a country that barely recognizes the problem and provides almost no medical support network. Yet their attitudes remained upbeat when we came to their homes for an interview. In some cases they had scraped together funds for expensive surgeries in the United States, and thus felt privileged just because they could walk.

My entire group of Elon grad students was equally touched by the encounters. We laughed with these Panamanians, cried with them, played games and told jokes. Literally and figuratively, they took our pictures just as we took theirs.
The effect was profound enough that on the plane rides home there was frequent chatter on what we need to do for the next week building the interactive website for OI in Panama. We weren’t just longing to go back to Panama. We were actively looking forward to the coming week of work ahead in Elon, where the technical resources will make it possible to bring to life all the compelling footage we captured on location. It’s hard to think of a project I’ve ever felt more motivated to complete than this website.

It may not stop there. The foundation invited us back for spring break, when a special event will be held to launch the site and build buzz among the non-profit and medical communities in Panama on what can be done to help. There are still other deliverables beyond the website that our group has discussed as ways to make the campaign stronger.

At the end of the trip myself, web developer Karen Hartshorn andtranslator Mari Vicky Langman presented the digital mock-up of the site to the heads of the foundation. The director teared up with joy, exclaiming how this project will change the lives of the children we met. Given the talent and dedication in our group, I know it can.
It has certainly left a permanent imprint on mine.

Memorable tidbits from Panama

The Panama Canal Zone and much of Panama City are very Americanized. This has to do with the strong American presence that existed here when the Americans helped build and worked at the canal. But still, there are many culture difference and we have experienced tons of them since we have been here. There have also been some other crazy stories.

Here is a list of some of some of them:

– The drivers here are nuts. They beep constantly and are not shy at all when cutting you off and changing lanes. It’s been scary but fun at times to drive around here. I think I have mastered the horn.

img_0767– Military police checkpoints are common in Panama. It isn’t a rare occasion to several of these police officers dressed in military clothing, bullet proofs vests carrying sawed off shot guns. It’s a scary site especially when they don’t smile.

– Bathrooms: The bathrooms in the canal zone and Panama City have been up to standards, but when you venture out of the city they get a little nasty. One bathroom was just a cement hole in the ground and another didn’t have running water, just a bowl as a sink to wash your hands. I can’t imagine that water was too clean.

– You don’t see breast feeding in public every day while living in the U.S. and you don’t in Panama either. But our group has seen a total of four women breast feeding in public so far. We actually had our first interview subject begin breast feeding during our interview with her. That was definitely a first for me as we stood inside her rundown hut asking her questions, only to be interrupted by a short breast feeding session. She took it back out at least 10 more times. Can you spell awkward?

– The weather has been hot everyday without a drop of rain in Panama City and the canal zone. We did get a tiny bit of showers last week when we traveling outside the city. It even created a beautiful rainbow in the sky above the highway. It was awesome.

– The beaches in Panama have black sand, or at least the ones we went to. You can also horseback ride on the beach. The bathing suit styles wern’t too different, but definitely were not the same as in the U.S.

– Livestock are everywhere in Panama. You can see cows off the side of the road, but it is the wild chickens on the side of the highway that deserves some attention. I didn’t run over any chickens, but a large unknown bird did fly into the back of car. I don’t think he survived. The dogs and cats over here also roam the streets, but its the dogs who look thin and malnourished.

There are definitely more stories to share, but that’s a good start for today. Now it’s time to head to the canal for our all-day Canal tour.

Lost in Translation

During our time in Panama, we listened to countless interviews of OI patients and their parents, friends, and families.  In Spanish.

Because you know the context of the interview (that it’s about OI and the struggles and hardships that come with it), you assume you understand the answers and stories the people are delivering.  You hear the translator’s summary of what has just been said, and you compile an idea of the situation at hand.  Then you go to the next interview and repeat the process.

So I was amazed to learn that I had missed so much!  Back in the United States, as the interviews were being transcribed word for word, I discovered so much more than I had assumed I had known while in Panama.

So much more emotion was evident in the word for word transcriptions.  So much more detail about hardships was described.  So much more everything had been lost in translation.

As I was editing the stories for the web that our copy editor had written, I was most moved by the story of Kenneth, a young 10 year old boy who had lived in poverty, suffering 172 fractures.  What I missed from this interview while in Panama was Kenneth’s positive attitude.  I had missed that he had a favorite soccer player, and I had missed that he compared his soccer skills to the famous soccer player’s.  This little boy, who can only sit and hit a beach ball up and down with his toes, is positive enough to believe that he shares soccer skills with his favorite player.  This kind of outlook that Kenneth portrayed, that he was just like any other person, and especially like a professional athlete, is something that I am glad I was able to finally discover.

Feeling a sense of good will

The more I work on this project, the more joy it brings me.

Being in Panama with the fast paced schedule we were on, caused many experiences and sites to fly by me without my knowing. Now that I can actually look back and remember the amazing opportunities presented to us, it’s really sinking in. I really didn’t expect us to see everything we did, much less experience part of the journey that some OI patients have to take. Thinking back, it is easy to see how spoiled we are in America.

While they do use American currency alongside Panamanian coins, the income levels are no where near the same as in America. This also means that many things cost less down there, but some patients of OI still have trouble paying the $3 necessary for a trip into the city. It is a wonderful feeling to know that by completing this project, those less fortunate can potentially have a greater quality of life. Of course, part of that is up to you dear reader. Spread the word and donate when possible to help OI patients in Panama. They need your help and you’ll feel better knowing that your helping a worthy, but unknown need in Panama.

Day Six: Children’s Hospital

By Alex Kreitman

We visited the Panama City children’s hospital today and talked with two doctors that treat OI in Panama. They both have worked extremely hard during their careers to treat Panamanian children and improve their quality of life. I was touched by their work.

Dr.Mejia head sup the OI treatments in Panama. A few years ago he was basically the only doctor treating the disease. Now, through his efforts and work with the Crystal Kids Foundation they have more doctors treating OI properly and they are helping the children.

The hospital itself was a little run down and there were a ton of people waiting to be seen for care. The patient rooms were not very big and they had up to 12 beds in each. There was not a lot of privacy for the patients.

We saw the physical therapy wing and watched a cute little boy named Jose go through his treatments. I did an interview with one of the physical therapists who took us through all the different areas and told us what they are used for. It was really interesting. She said they also teach families how to conduct physical therapy on their own and in their own homes since many families live hours away with many mountains, rivers and obstacles in the way.

After that we went back to the foundation’s office and finished interviewing the president of Crystal Kids, Dayana. It was an emotional interview for sure. She touched on her own experiences with her daughter having the disease and then talked about her efforts to help the other children of Panama with OI. The more and more I talk with her the more and more she amazes me. She is a fighter and she is constantly fighting to get proper medicines legalized in Panama for these children. She is traveling across the country raising awareness and finding cases of children with OI. It is truly remarkable.

At this point I am getting antsy to go on our tour of the Panama Canal. We supposedly will also see crocodiles, monkeys and other exotic animals. I can’t wait!

Treating the Symptoms, Not the Disease

by David Parsons

On the second day of our trip, our group of met some of the most courageous and amazing individuals in Panama. What at first we expected to be simple field interviews turned into an experience that will stay with most of us for the rest of our lives.

Kenneth’s home is a small, simple house within a shantytown just outside of the city.  Fearing the extra costs associated with OI, his birth-father left the family shortly after finding out about Kenneth’s condition, leaving the them in a state of financial and emotional distress. Kenneth’s mother, unemployed and now dependent upon her new boyfriend’s generous contributions to the family, must take care of Kenneth and his condition as well as the other three children in the family.


There are several types of OI, some with symptoms tapering off shortly after puberty, and other more severe cases that can cause a form of dwarfism. Kenneth has it bad. Not only has the family’s monetary troubles kept his fractures from being properly treated as they occur, but at 10 years old he has suffered over 172 broken bones. The deformities in his arms and legs act as a constant reminder of the severity of his condition.

The proper process for treating OI consists of tending to a fracture shortly after it occurs, undergoing physical therapy to strengthen the muscles around the patient’s fragile bones, all while receiving quarterly doses of Sodium Pamidronate, a drug that strengthens the patient’s bones and must be administered intravenously during an overnight stay at a hospital or clinic.

Due to his financial situation, Kenneth’s best treatment has been limited to merely tending to his broken bones as they occur, and giving him medicine to reduce the pain when the family could afford it.

Despite a lifetime of inadequate medical treatment, Kenneth has an extremely positive outlook on life that, even through a difficult language barrier, was evident to our group. He has a smile that can light up a room, and his excitement to be interviewed seemed to take his mind off of any pain he may have been experiencing at the time.

Sorting through the footage and photos we captured on our trip has been a daunting task since our return, and the work we have ahead of us is comprehensive. But, even in the early hours of the morning after a full day of web design, video editing and translations, it only takes one thought of Kenneth – or any of the children we met for that matter – to remind us of why our work is so important. It is for this reason that, even in our darkest hour, we push on.