"She's my little angel," Joseph Hurst said as he cradled his child tightly in his arms. "When she sleeps, she's very peaceful, it doesn't seem possible what she has."
Little Savannah was born healthy but soon had trouble with her feet and then her eye. She was in and out of the hospital. Powerful intravenous medications seemed to help, but then she got worse.
"October 2012," her mother Renee recalled, "we started noticing a rapid decline."
That's when specialists diagnosed her with a genetic disorder called Metachromatic Leukodystrophy, or MLD for short. Neither mom nor dad had any idea they both harbor the gene.
"It's a mutation of the enzyme in your DNA," Renee explained. "When both mom and dad are carriers, there is a 25-percent chance the child will have the luekodystrophy."
There was no family history of the disease in either family, so it happened without any warning.
Last spring, Savannah's MRI was normal. By fall 2012, it was filled with abnormal signals that confirmed the diagnosis. Now Savannah's parents watch her get worse.
"She stopped wanting to eat last week," Renee said. A feeding tube in her stomach now gives her nourishment. "She's not crawling, she's not walking, she's not moving her arms, she's not moving her legs. The only thing she can do is smile and laugh."
But what's most difficult for Joe and Renee is their little girl can no longer talk. Joseph says what he misses most is how Savannah used to greet him when he got home by calling her daddy with outstretched arms waiting for a hug.
"I already miss that because she can't hold her arms out any more. She can't speak," he said tearfully.
But her inability to speak hasn't kept her from giggling when her parents talked about 'Winter' the dolphin and a recent behind-the-scenes tour of the Clearwater Aquarium.
"You can tell her opening her mouth, and you can see she's saying it in her eyes, and we take all of that in, as much as we can," said Renee.
What most would consider devastating, the loss of their child's ability to communicate has now blossomed into an opportunity. Savannah's gained a new, different voice that's been heard around the world.
Renee believes, there is a higher purpose for their sorrow. "She was brought here for us to do something, for us to get the word out, to do amazing things."
Joe and Renee made a YouTube video detailing Savannah's journey. They're now sharing it on Facebook.
"She's touched a lot of hearts," Joseph continued. At least 6,500 so far. That's how many people have watched the video produced by a friend.
"I think social media has helped families like Savannah's family because they can reach out to other people," offered Dr. Laura Drach, who coordinates Savannah's palliative care at All Children's Hospital in St. Petersburg.
"Say there's another MLD family in California, and they are able to link up to that family, that family can say this is what happened to our child and to have that conversation with them, to let them know that they aren't the only ones who've gone through the process, or dealing with MLD," added Dr. Drach.
Savannah's parents hope the video connects their daughter with a miracle. Experts believe simply the search for one can prove just as powerful.
"My hope for all my families is that if they do lose their child, they are comfortable and they did everything they could, that if there was something to be done, that they could explore those options."
"I truly have come to peace with it. My husband and I did everything we can do to take care of her, she was taken care of completely," said Renee, who is trying to find peace in letting go.
Through social media and the hospital, the family has connected with information about experimental stem cell and bone marrow treatments. The reality is, there is no guarantee it would work and it would not reverse the damage that's already been done.
Overall, doctors give Savannah less than two years to live.
Her parents are now cherishing each and every moment. Savannah's favorite animated video stars "Sam" the turtle. Her parents say she watches several times a day. It's their hope to take Savannah to Sea World to see the turtle exhibit before she is too sick to make the trip.
Joseph still prays for a miracle. "I love her, our family loves her. God will help you through all."
Savannah's Facebook page: https://www.facebook.com/Savannahs.Journey2010
WTTG FOX 5 & myfoxdc
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