audio, stills, text and or video: Go to http://www.zReportage.com to see more - ''The first time she grabbed my finger and gave me that look, that was it,'' Joe said. ''I melted.''She was babbling by 6 months. Walking at 10. Right on cue. But one day, as Savannah toddled across the house, her pinky toes were raised off the ground. That's strange, thought her mom, Renee. Savannah was just learning to walk, said the pediatrician. Totally normal. A few days later, Savannah awkwardly arched her back in the crib. Then, her left eye drifted toward her nose. Soon, she started dragging her foot. Back to the doctor. This time, a neurologist. An MRI. Savannah stopped walking. Doctors kept guessing at what was wrong. After a year, Savannah spoke her last words. Her legs stopped moving. Finally, at the hospital, they got a diagnosis. ''She has white matter on her brain,'' the doctor said. ''There's no cure.''
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March 7, 2013 - Clearwater, Florida, U.S. - JOE HURST, 38, leans into his daughter SAVANNAH HURST during a thirty-first month party at the family's home. 'Just because you're 31 doesn't mean you can act out,' he joked. 'No drinking, and you can't date yet,' he told her. Savannah has been diagnosed with a genetic brain disorder called Metachromatic Leukodystrophy.
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May 7, 2013 - Clearwater, Florida, U.S. - RENEE HURST, 37, holds her daughter's hand in the family's home. At only 2 years of age Savannah Hurst has been given less than a year to live due to the terminal genetic disorder, MLD which is a genetic disorder that affects nerves, muscles, other organs, and behavior. It slowly gets worse over time.
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May 7, 2013 - Clearwater, Florida, U.S. - SAVANNAH HURST, wearing a birthday crown, smiles as people sing 'Happy Birthday' during a 34 month party at the family's Clearwater home.
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Apr 30, 2013 - Clearwater, Florida, U.S. - RENEE HURST, 37, puts SAVANNAH HURST to bed with the help of Joe Hurst, 38. They have spent many uneasy nights with their baby between them listening for signs of distress.
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May 7, 2013 - Clearwater, Florida, U.S. - JACKSON HURST, 5, sings to make his sister, SAVANNAH, smile. He adores his little sister, and has struggled to make sense of why something is wrong with her.
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April 1, 2013 - Orlando, Florida, U.S. - The Hurst family make memories together during a trip to Orlando. SAVANNAH could not see the show, her vision has faded, but she smiled at the music and sounds of the dolphin show.
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May 7, 2013 - Clearwater, Florida, U.S. - RENEE HURST, 37, paints the hand of SAMIR MOHAMMED, 4, as friends and family who have rallied around Savannah create a memorial canvas. Their Clearwater home bussled with supporters during a 34 month party for Savannah.
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4/30/13 - Clearwater, Florida, U.S. - JOE HURST puts together JACKSON'S first bicycle as RENEE gives SAVANNAH a sponge bath on the living room couch. The family keeps the action, and as much fun as they can, centered around Savannah.
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April 22, 2013 - Clearwater, Florida, U.S. - RENEE HURST gets a smile from SAVANNAH as JAMIE CHORNY paints her nails during 'ladies day.' The friends take a long lunch on Mondays, pamper Savannah and drink mimosas.
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March 7, 2013 - Clearwater, Florida, U.S. - RENEE HURST, 37, takes a moment with her daughter SAVANNAH while transferring her from her wheelchair to cushions in the family's Clearwater living room.
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