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    Posted January 22, 2014 by
    Brooklyn, New York
    This iReport is part of an assignment:
    Living with a rare disease?

    Leigh Syndrome Taught Me How To Live


    CNN PRODUCER NOTE     CaroleAmber says she hopes adults and kids take one thing away from her book: "You are perfect exactly as you are."
    - JacqueCNN, CNN iReport producer

    “Your son may not see his second birthday.” I heard these words five years ago, when my son TJ was eight months old. This is how my family began to live with Leigh syndrome.

    Leigh syndrome is rare genetic mitochondrial condition that affects the body’s ability to covert food to energy. Progressive and fatal, Leigh syndrome eventually leads to movement issues and respiratory failure.

    TJ only lived for four months after we heard those fateful words.

    But, our wise little TJ taught us how to live. With his bright smile, peaceful eyes, and happy coos, TJ lived with Leigh syndrome better than most people live with regular life.

    Even after shots and surgeries, TJ would tip his head back, open his mouth wide, and roar with big belly laughs. He lived each day in the present, found joy in the little things, and emanated peace. And every day, TJ’s demeanor would say, “Mommy and Daddy, I’m okay. It must be this way.”

    TJ lived with Leigh syndrome so well, that he inspired me to write the children’s book THE GIFT OF THE LADYBUG. Its message is that you are perfect exactly as you are.

    For more information about TJ’s story, THE GIFT OF THE LADYBUG, or Ladybug Celebration Week (a celebration of children with medical differences from January 24-February 1), visit

    In love & peace,
    Carole Amber
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