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SB2254

  • Manar 013118 sb444SPRINGFIELD – Legislation to set aside May 17 of each year to raise awareness of a rare and incurable form of childhood brain cancer was approved Wednesday by the Illinois Senate.

    The measure, sponsored by State Senator Andy Manar (D-Bunker Hill), was prompted by the advocacy efforts of Bunker Hill mother Kim Skief, whose 11-year-old daughter, Grace, died from Diffuse Intrinsic Pontine Glioma, or DIPG, in 2015.

    The Senate approved the measure, Senate Bill 2254, 56-0. It was sent to the House for consideration.

    “Grace’s story is a simple reminder that medical cures and care, sadly, are not guaranteed to all of us. That’s why I’m working with her mother to help raise awareness about this childhood cancer,” Manar said. “Although DIPG is rare, when it strikes it is painful, and unfortunately it is quick.”

    DIPG is an aggressive form of cancer that targets children almost exclusively – about 300 each year in the United States. It affects the part of the brain that controls the heartbeat, breathing, swallowing, sight and eye movement, and balance. It is in operable, and the survival rate is less than 1 percent.

    Grace Skief was a fifth-grader when she was diagnosed with DIPG in April 2015. She died three months later, on July 31, 2015.

    Twenty other states have set aside May 17 to raise awareness of this heart-breaking childhood cancer and the lack of a cure for it.

    Present in the Senate gallery during Wednesday’s vote were Kim Skief and her son, James, both of Bunker Hill; and Grace’s grandmother, Carol Robbins of Alton. Manar thanked them for their advocacy and their courage.

    “Any number of things could happen after tragedy strikes a family, as we often see when families visit us in the Senate,” he said. “At the lowest point the Skief family somehow mustered the strength and courage to move on and make something positive out of what undoubtedly is the most difficult situation anybody could go through.”

    For more information about DIPG, visit http://www.defeatdipg.org and http://www.cancer.gov.