Ann Reinking brought Emma Morris and me the idea of doing a much-needed film on Marfan syndrome. Her son Christopher, then is in his teens, suffered from the breakdown of whole-body connective tissue.

Almost no one I spoke to knew anything about the disease. Young teens with Marfan are characterized by unusual height and long, spindly fingers and limbs. Great for basketball, but impossible for the valves of the heart. And that becomes life-threatening. The families whose children were diagnosed with Marfan syndrome did not know where to turn, nor what to expect.

To start the filming, we began following 3 families. Facing so many unknown factors of the syndrome alone was overwhelming. Now they would come together to attend an annual Marfan Syndrome Conference, this year on the Stanford campus. They had access to many doctors who could examine and counsel them on the multiple aspects of the disease. But for the kids, the social activities and camaraderie were the reason for their enthusiasm.

One of those events was the challenge of a harnessed rope-climb high into the California trees. The kids partnered to each scale a tree to the top. Reaching out, they then took the hand of their partner and were slowly lowered down to the ground, to rounds of applause. When Ann reviewed the footage she proclaimed “they look like silk floating to earth!” She saw the opportunity to choreograph the extraordinary, long and languid bodies in her mind’s eye. And later we were able to capture her process with a small volunteer group of kids. The result for them was amazingly life affirming.