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At age 5, Amelia Pounds is already facing one of life's more painful experiences.
Her younger sister, 2-year-old Annabel, has Tay-Sachs disease, and Amelia has been watching her progressively lose her ability to see, speak, and move.
Tay-Sachs is a rare genetic disorder for which there is no known cure or even treatment, and children with the disease often die before they reach their fourth birthday. Annabel's been receiving hospice care for 14 months.
When Amelia started to ask her parents probing questions about Annabel's illness, Casey and Tommy Pounds recognized that she had more fueling her imagination than the average preschooler.
"Her questions were always appropriate," Casey told TODAY. "But they would frequently lead to tears from all of us."
The Pounds realized that Amelia needed professional assistance to make sense of her sister's condition, so they contacted their hospice for help. It was at that time that they were pointed in the direction of the Sing Me A Story Foundation.
Sing Me a Story is a Nashville-based organization that seeks out sick and otherwise disadvantaged children across the globe, and gives them a voice through custom-made melodies and lyrics specific to each child's unique circumstances.
The children, selected by partnering organizations, are asked to write or draw stories about absolutely anything that captivates their imagination. These stories are then distributed to songwriters, who take the time to turn them into songs, record them, and send them back to the children and their families as digital files.
"I wasn't familiar with the organization at all," Casey admitted. "But one of our hospice team members was on their board. She started explaining it, and by the time she got two sentences in, I was jumping up and down, saying, 'Yes, yes, yes.'"
The idea started in May 2010, when co-founder Sara Doschadis met singer-songwriter Austin Atteberry in Nashville. At the time, Sara was a child life specialist at the Monroe Carell Jr. Children's Hospital at Vanderbilt, and she encouraged Austin to volunteer there. Eager to spend more time with her (and always happy to help out a good cause), he agreed.
It wasn't long before he was spending day after day at the hospital as a "music volunteer." His natural inclination was to bring his guitar, sit at the kids' bedside, and ask them to just "tell him a story."
Using their own words as inspiration, he'd craft a tune to sing back to them.
"I saw that the voices of these children, who had all fallen victim to circumstance, had the power to capture what's common and pure in us all," he told TODAY. "It was an amazing realization."
In January 2011, Sing Me a Story was born with a simple mission: to deliver music to those who need it.
When Amelia Pounds began her own Sing Me a Story journey, she was tasked with filling a blank book with drawings and words that reminded her of her sister. A social worker helped her stay on track by asking her questions about her thoughts on her sister's condition. But, like any child might, Amelia had trouble sticking to the topic at hand, and her narrative veered off into a colorful, imaginary land where her sister had a "magic face" and saw "sparkly colors."
Eventually, the transcript was sent to singer-songwriter Treva Blomquist.
"I'd never met the family," Blomquist, a mother of two, explained to TODAY. "But just by looking through that book, I saw that the story was all there. I saw the love in it. I saw the mind of a child in every drawing and word. I was fascinated and moved.
And there was one theme that stuck out to me: the theme of having this one moment, and knowing that's all you have."
With all that in mind, she began crafting a song.
And thanks to musician Ben Folds, she'd get her chance to record it in a top-notch studio. When his Grand Victor Sound studio in Nashville (previously home to the famed RCA Studio A) got wind of the project, they offered free recording time. Grammy-winning sound engineer and producer Julian King also donated his talents to engineer the session.
A short while later, the finished product was sent back to the Pounds family in the form of an MP3.
"We all sat together and just listened," said Casey. "As I heard each lyric, I couldn't believe it. I was overwhelmed, really. We all sat there silently crying. Amelia couldn't stop smiling. This was her song."
In the song, aptly titled "I Have You Today," Amelia's fantasy world comes to life.
"Magic shoes / Upon my magic feet / We dance all night to the magic beat..."
But listen carefully, and you'll hear a more mature voice come through.
"I have you today / Time may not always be on our side, so let's begin / This is the only ride / In another world, we might be different / In another life we might want more / But I wouldn't trade a single minute / And I couldn't imagine ever loving you more..."
"It's something that Amelia will treasure, I know, forever," Casey remarked quietly. "Even when she's 60, you know, she can still listen to that song. She'll sit there, and she'll remember what it was like to be a big sister."
You can follow Annabel's story on her Facebook page.