Bones that break. Spirits that don’t

Kenneth is 10 years old. He loves soccer, video games and math, with a goal of one day becoming an accountant. He can break out into song on request, or juggle a ball with his feet.
What Kenneth can’t do is count on his bones to cooperate. The only near certainty is that they will break, as they have 172 times since he was born.
This is what Osteogenesis Imperfecta can do to a body. By dramatically changing the way collagen is produced, bone structure is fragile and fractures can take place during everyday tasks. Without specialized treatment and physical therapy to repair those fractures, the setbacks only get worse.
Kenneth is but one of seven courageous individuals with the disease we’ve interviewed in their homes during these first few days in Panama. Like Kenneth, they all have resilient, upbeat attitudes despite their condition. Yet they all have their own unique medical setbacks that prevent them from getting the help they deserve.

Eventually that help will need to take the form of trained doctors inside the country. By telling the amazing stories of those in Panama with the disease in an engaging multimedia format, my group hopes to do more than just get people to donate money or even volunteer their own time. Ultimately the word will have to get out to the medical community to move American doctors into taking their services to Panama or Panamanian doctors into learning the specifics of OI.

There is no cure for the disease, but with the right support network it can be managed. This trip isn’t all about documenting sad stories, but also highlighting the way some semblance of a normal life can and has been achieved even in the face of extreme medical adversity. We’ve heard about amazing ambitions, dreams and success in not letting brittle bones break the spirit.

Such hope will play a centerpiece in our project’s website, which my classmate Karen Hartshorn and I sketched out yesterday and will start building in the next few days. There is no challenge in having content, only in finding the right way to present and navigate through so much compelling footage. Done right, I hope our audience will be moved not so much by the tragedy of this disease, but by the resolve shown to persevere through its pain.

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