The Oscar-winning directors of "War/Dance" discuss the life-changing experience of meeting Sam Berns, a 13-year-old afflicted by the rare genetic disorder of Progeria, how they learned about Sam through his Lego room and why this was the hardest film they've ever made.
http://moveablefest.com/moveable_fest/2013/10/sean-fine-andrea-nix-fin e-life-according-sam.html
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This was a top-notch documentary! What can one say about these stories? The filmmakers pull this off in a very even handed manner.
As for the parents..., my God, I never knew that level of love and compassion existed in the human heart. I suppose it takes stories like this to really bring it out.
For a second I thought, why devote so many precious resources to a disease that affects one in millions?, but after watching this, I understand why.
Sam's mother is an extraordinary human and Sam is fortunate in an ironic way to have her as his mother.
I know women today who have ultra sounds to make sure their fetus doesn't have some serious defect. If they do, they abort the fetus. I'm pro-choice all the way, but compare these women to Sam's mother.
Save me from the people who would save me from myself
An interesting irony is that since Sam's mom and the other scientists on the team have now identified the progera gene, women will be given a choice to abort their progera baby when they have amnio during pregnancy. The search for this gene was meant to save and extend life but it may ultimately be used to end life before it begins. It's such a tough question and would have been interesting if it had been explored in the documentary. If I were pregnant and my doctor told me that my baby would have progera, would I continue the pregnancy? I would hate to think of a world without Sam Berns and I look forward to hearing great things about his college years and beyond!
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