12-1.03.29-ED-LAUNCH-E_optI met the Martinellis a year ago when asked to photograph the family’s then four-year-old son, Thomas, for our April 2012 issue. Thomas suffers from Retinitis Pigmentosa, a disorder leading to tunnel vision and, potentially, total blindness.

Photographing ill or otherwise challenged children has never been easy, but the heartache was made worse by having a five-month-old son at home. Funny how parenthood changes things a little.

Still, there was a photograph to be made.

I’d printed an oversized eye chart to serve as a backdrop, and while the end result may look like we brought Thomas into our studio, in actuality we brought the studio to Thomas. After clearing furniture in the Martinelli’s living room, I used gaffer’s tape to mount the backdrop on a wall.

(Unfamiliar with gaffer’s tape? It’s a pricey yet priceless adhesive tape that normally won’t leave residue when removed. It’s used often by big Hollywood studios and lowly photographers alike.)

But setting up shop was the easy part; trying to photograph an excited four-year-old was not. Make no mistake: Thomas may have been vision-impaired, but this didn’t stop him from being an awesome little tornado who proved a delightful challenge to photograph even with a shutter speed of 1/200th of a second.

In the end, we managed to get our shot and Thomas received a four-foot-wide strip of white background paper on which to later draw.

I recently sent a follow-up note to Thomas’ mom, Kim Martinelli, who said Thomas is doing well. “His vision has declined some since last year,” she wrote, “but that doesn’t seem to slow him down one bit!”

The sixth-annual VisionWalk, which benefits the Foundation Fighting Blindness, is slated for May 11 at Bachman Lake.

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