Like most 16 year olds, Molly Nash is obsessed with getting her driver’s license. She talks about driving nonstop and is constantly begging her parents for practice time. The difference is this: Molly will likely have to sit on a booster seat for her driving test because she’s just 4 feet 5 inches tall. But she’s determined not to let her height, or anything else, stop her from experiencing this rite of passage. It’s yet another landmark that she was never supposed to live to see.

Molly was born on July 4, 1994, and about a year later she was diagnosed with Fanconi anemia (FA), an extremely rare genetic disease. Fanconi anemia is an insidious disorder, bringing with it a host of complications, such as cancer and bone marrow failure. (For Molly, that meant preleukemia at the age of six.) The end result of FA is always the same: death by 30, and often well before then.

5280 August 2010
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I first met Molly in 2005 when she was 10 and I was reporting “The Miracle of Molly,” published in the August 2005 issue of 5280. Five years earlier, her parents, Jack and Lisa, had made the controversial decision to genetically screen for a biological sibling who would be Molly’s bone marrow match and help her combat the preleukemia. (Their story inspired Jodi Picoult’s fictionalized book My Sister’s Keeper, which was turned into a movie starring Cameron Diaz.)

In the past five years, I’ve watched Molly grow up. I attended her bat mitzvah and looked on as she twirled, carefree and light, around the dance floor. I joined Molly and her younger siblings—Adam and Delaney—for raucous dinners where we were so loud I’m sure the restaurant was happy to see us go. I watched from darkened theater seats as Molly acted in productions of The Wiz, Side Show, and Man of La Mancha put on by PHAMALY (Physically Handicapped Actors and Musical Artists League). In these moments, and countless more, her disease fades into the background and Molly comes into focus.

The medical problems, though, will never disappear. While the stem cell-rich cord blood from baby brother Adam stopped the advance of the preleukemia and saved Molly’s life, it did not cure her: She battles FA and its ugly complications daily. She’s developed type 1 diabetes, endured double cataract surgery, and receives most of her nourishment through a detachable feeding tube. Just months ago, benign tumors snapped her shinbone in half.

Through those moments of pain and triumph, Lisa’s words echo in my ears: “Don’t judge me until you stand in my shoes.” That’s how she responded to people who criticized her and her husband’s decision to engineer a genetically matched baby to save their daughter’s life. I now understand that devotion—viscerally. A little more than three years ago, when I first held my own daughter, my heart leapt with a love I’d never known. And as those first prideful moments pounded through my veins, my pledge to provide and protect became indelible, instinctive, and immutable.

Today, I feel lucky to learn how Molly’s life is unfolding into new freedoms: swooshing down the slopes of Winter Park under the guidance of the National Sports Center for the Disabled, traveling to far-flung places like Greece, and acting this month in Beauty and the Beast. Soon, I’ll be looking for Molly on the road, her hands on the wheel and her eyes glued on what’s ahead.

This article was originally published in 5280 August 2010.
Amanda M. Faison
Amanda M. Faison
Freelance writer Amanda M. Faison spent 20 years at 5280 Magazine, 12 of those as Food Editor.