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.