Today I shadowed another photographer on a NILMDTS shoot. The tiny subject was a 3-week-old girl diagnosed with trisomy 13, which is a genetic disorder that affects 1 out of 10,000 newborns. In addition to displaying several of the many simptoms associated with this disease, like cleft lip or palate, and mental retardation, many of the babies affected by this disorder also suffer from congenital heart disease. And sadly, 80% of children with trisomy 13 die during the first month.
I was there as an observer, since this was the first case I was involved in, but also as an interpreter, being that the parents only spoke Spanish. The photographer did her job very professionally as I watched (she's already done several of these sessions), and everything proceeded so smoothly that I sometimes forgot what made this child so special. If you had walked in during the session you would have thought it was just another newborn portrait session, with the parents posing and holding their baby so proudly. But then, I would remember again that this child will be leaving this world soon. As I write this, and ponder about the whole thing, I can't help but think that by the time those proud parents receive their picture CD in the mail (about two weeks) that little girl will probably be gone.
The baby was fast asleep in her rocker, where the last pictures had been taken. "You look at my little girl and you don't really see anything wrong with her, but God knows why he does things", her dad said to me as we were getting ready to leave. What do you say to that?
Thank you for being there for that family.
ReplyDeleteYour gift will bring so much peace to those parents. You are a hero in my book.
With warm regard,
Sandy Puc'
Co-Founder NILMDTS
Thanks Sandy for making all this possible.
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