Taylor's Tale

Taylor's Tale

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Read my blog for a personal glimpse into our world, forever changed by Batten Disease.

4.26.08--Save the date! The Second Annual Taylor's Fairy Tale Ball is on February 7, 2009 at the Mint Museum of Art.

TAYLOR KING is nine years old. She has hopes and dreams. She wants to get a 100 on her spelling test every week. She still believes in Santa Claus. She wants to be a Tar Heel like her Sissy. She wants to marry her handsome prince, just like Sleeping Beauty.

Taylor's dreams are simple and pure, yet she stands to lose all of them. Taylor has INFANTILE NCL, the most rapidly progressing form of Batten Disease. BATTEN DISEASE is a rare, neurodegenerative disorder that strikes children. It causes blindness, cognitive and motor impairment, seizures and eventually death. It cruelly robs children of their hopes, dreams and lives. It robs families of the hopes and dreams they once held for their children.

Please join us in our mission to save Taylor and other children like her. These pages represent only a fraction of Taylor's Tale, and our hope is that we may be able to go on writing it for a long, long time. Alone, we can only love her and help her create happy memories. With your help, we may save her life.

   OUR MISSION is to save Taylor and other children like her.

   OUR GOAL is to raise funds for and awareness of Batten Disease.

   OUR HOPE is that we may be able to go on writing Taylor's Tale for a long, long time.

Protecting Taylor: Taylor knows that she has something called Batten Disease. However, we have chosen not to burden her with graphic details. Taylor still has dreams, and she still believes she can live them. If you know Taylor, we ask that you not discuss her illness with her. Thank you for understanding!

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Last Updated 5/11/08