DIPG claimed life of 11-year-old Bunker Hill girl in 2015

Grace Skief 350BUNKER HILL – Grace Skief was 11 years old in April 2015 when she was diagnosed with an aggressive, incurable brain cancer that left her unable to speak, swallow or move.

A fiercely determined and kindhearted girl, Grace was a joy to her family and friends – full of life, laughing and telling jokes, playing with her older brothers, baking for loved ones, cheering at soccer games and offering gifts of comfort to others in their times of need.

With no medical treatment available and statistics showing a survival rate of less than 1 percent, Grace’s family did its best to make her comfortable. She died three months later on July 31.

“We were devastated. We were told there was no treatment that could save her life. We could either choose to do something that might extend her life but make her miserable, or take her home and let her die. That’s an unthinkable choice for parents to have to make,” said Kim Skief, Grace’s mother, who lives in Bunker Hill.

Senator Andy Manar (D-Bunker Hill) is working with Kim Skief to raise awareness of the cancer that claimed Grace’s life. He is sponsoring a measure that would designate May 17 of each year in Illinois as Diffuse Intrinsic Pontine Glioma (DIPG) Awareness Day.

DIPG is a highly aggressive cancer that affects an estimated 300 children each year in the United States.

“My children today are around the age Grace was when she was diagnosed, and her story is a reminder that medical care and cures, sadly, are not guaranteed to us,” Manar said. “That’s why awareness is so important. I want the Skiefs and other families that are going through an experience with a rare cancer like DIPG to know they are not alone, they have not been forgotten and they have a voice.”

Although 10 to 20 percent of childhood brain cancer is DIPG or brainstem tumors, DIPG is particularly difficult to treat because its location in the brainstem makes it difficult to remove the tumor through surgery or to obtain tissue for a biopsy.

Kim Skief said she hopes medical researchers will make more progress in identifying improved treatment options for children with DIPG.

“Our hope in creating a law is that it will continue to build on the awareness that is being fought for by families not only throughout Illinois, but across the nation,” she said.

“We believe awareness is the key to a cure because we understand that when more people care, more good will be accomplished. I hope Illinois lawmakers will join Senator Manar in using their power to bring attention to this deadly disease and the need for a cure.”

The legislation is Senate Bill 2254.

Pictured: Grace Skief as a young child. Photo provided by Kim Skief.

Category: People of the 48th

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