Thursday, February 23, 2012

The legacy of Kathryn "Kay" McGee a NDSC founder

from The State by Graydon Megan - Chicago Tribune:

When her daughter Tricia was born with Down syndrome in 1960, Kathryn "Kay" McGee refused to accept the conventional wisdom back then that the best course was to put the child in an institution.

"Medical advice was not to bring the baby home," said McGee's son Michael.

Instead, McGee took her daughter home and started the National Association for Down Syndrome.
 Today's news video "She said, 'This is not good enough,' " said Sheila Hebein, recently retired after 30 years as the group's executive director. "She gathered a group of like-minded parents and medical professionals to maximize the possibilities for our children."

McGee, 91, died of natural causes Thursday in her River Forest, Ill., home, her son said.
Born Kathryn Greene, she grew up in Chicago's Lincoln Park neighborhood. She graduated from what is now Chicago State University and taught briefly in Chicago Public Schools.

She married Martin McGee in 1943. By the late 1950s, the couple, then with three children, moved to River Forest. The birth of her daughter led her to start the association in her home.
"It takes your breath away when you first get a diagnosis of Down syndrome," said Hebein, who has a son who was born with the condition.

McGee and her husband were determined to explore every possibility for their child and for others with the syndrome, Hebein said.

"Kay reached out. They had meetings in their home," Hebein said. "She had such energy and was determined that Tricia and other children were going to have a good life."

Her other children also helped. "We were warned everybody would have to pitch in," her son said.

As a teenager, Tricia sometimes answered the phone line reserved for calls from new parents of Down syndrome children and took messages. Those parents were often surprised and heartened when McGee told them that her daughter with Down syndrome had answered their call.

McGee recruited nurses and other hospital personnel to pass along the association's phone number to parents of children born with the condition, along with information about options beyond institutions, her son said.

McGee's challenge was daunting, Hebein said. In those days, educators and others understood little about Down syndrome or the abilities of the children, she said.

"She saw each child as having his or her own gifts and challenges and encouraged parents to build on those gifts," Hebein said. "Now our kids are in regular schools - they're artists, they're athletes."

In addition to her work with the association, McGee was a founder of the National Down Syndrome Congress. The Georgia-based organization was begun in 1973 as a national resource for people with Down syndrome and their families.

"She had an impact way beyond Illinois," Hebein said.

By the mid- to late 1970s, McGee stepped back from daily operations of the association to focus on long-term concerns for people with Down syndrome. She became active with such groups as Misericordia Heart of Mercy, the Chicago home for children and adults with developmental disabilities where her daughter Tricia now lives.

"Kay became a very active member of our family," said Misericordia's director, Sister Rosemary Connelly. "So vibrant, life-giving, she was a gift to any organization."

In addition to her son and daughter, McGee is survived by another daughter, Jan Barnes; another son, Martin; and five grandchildren. Her husband died in 2000.

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