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  • Stephanie's Story from American Brain Tumor Association Co-Founder, Susan Netchin Kramer:

    In 1972, I was a busy young mother with two preschool daughters. In March of that year, my life changed forever. I learned that Stephanie, my 4 1/2 year old, had a brain tumor.

    We entered that mystic medical world and discovered surgery, angiography, the new CT scanner, pain and fear. My Stephanie, ever the fun loving, joyful child, handled even that frightening place with her usual "joie d'vivre." We could not have asked for more in a child - she promised so much: bright, caring, loving and remarkably beautiful.

    The doctors' diagnosis told us that Stephanie's promise would never be fulfilled. No, not Stephanie; not my child. Such things happen to other people. But, truth to tell, we aren't other people.

    After surgery, radiation, and a desperate futile trip to psychic healers in the Phillipines, we settled into a reasonably peaceful existence. Stephanie entered kindergarten, gained weight and looked fairly healthy, if fragile. She continued dancing and skating lessons and swimming, her favorite. She was a summer child - a "sun" child.

    We desperately tried to make life normal, prayed the doctors were wrong, and watched fearfully for any signs of her declining health. But, I could not simply wait for impending doom; I had to look for other answers.

    Through the network that seems to operate when tragedy strikes, I met another mom – Linda Gene Goldstein – who had recently lost her 6 year old daughter, Micki Rae, to a brain tumor. In hopes of finding a miracle for Stephanie, I asked the other mom if she wanted to start a foundation in memory of her daughter to raise funds for brain tumor research. At the time, there was little funding for brain tumor research. We learned that far more was needed than just money: support and information - where to go, what to do, who to see, how to cope.

    In January 1973, we began planning. We contacted family, friends, associates, and doctors. In April 1973, one year after Stephanie's diagnosis, we held our first informational meeting. We were heartened by the wonderful response of many people. I never could have imagined that our little foundation would grow into the international organization it is today.

    In June 1974, two years after Stephanie completed radiation therapy, the tumor was back. With great hopes, we began experimental chemotherapy. Stephanie spent the summer in a wheelchair, traveling to California for her treatments. We went daily to a swimming pool so that she could be comfortable and move around. On August 19, we celebrated her 7th birthday with great "hoopla" - at the pool, in the sun. Two weeks later, on September 3, 1974, we lost her.

    But she had been so very special, she touched the lives of everyone who knew her - more memorably than many who have the full measure of time - that I believe she had a purpose here beyond just for those of us who loved her. In Stephanie's name, I wanted to try to help others find answers and cope with this terrible illness. Perhaps then Stephanie would continue to touch other people's lives the way she touched ours. She lives always in our hearts and minds. I believe that through the ABTA, her promise is being fulfilled.

    Susan Netchin Kramer is a Rare Life Award Nominee. Read her story and vote here!
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