By Devin Rose
Kathryn E. "Kay" McGee, 91, who founded the National Association for Down Syndrome after her daughter was born with the condition in 1960, died on Feb. 16, 2012 at her River Forest home.
McGee was a very dynamic woman and leader "at a time when there weren't a lot of dynamic woman leaders," said Sheila Hebein, a former executive director of the organization for 30 years.
"She just brought a lot of energy and enthusiasm to anything that you were doing," said Hebein, who got involved with NADS after her son was born with Down Syndrome in 1972.
In the 1960s and '70s, doctors of parents whose children were born with the condition would advise them not to take their babies home, Hebein said. Most children with Down Syndrome were placed in institutions, and doctors didn't give explanations about why that should be done.
"Kay and [her late husband] Marty just didn't buy that," Hebein said. The couple already had three children, and they decided to take their daughter, Tricia, home.
Their son Mike was 8 when Tricia was born. When she came home, the family turned their focus to learning what it meant to have a child with Down Syndrome. They tried to figure out what kinds of educational opportunities and medications were available.
The milestones his sister hit, like learning to walk, speak, read and write, helped motivate his parents, Mike McGee said.
Once the organization was up and running, its early days were not very structured. McGee reached out to institutions to find resources and, through word of mouth, found other parents whose children were diagnosed with Down Syndrome. Before they got computers in 1989, she would put together newsletters on a mimeograph machine. And she invited researchers from France and Germany to the group's meetings at her Ashland Avenue home.
Among the researchers was Dr. Jérôme Lejeune, who discovered that people with Down Syndrome have an extra chromosome.
Mike McGee said the family had a second phone line for the organization, which was not common at the time. He remembers his mother spending a lot of time using it in the evenings to talk to other parents. He and his siblings would help stuff and stamp the newsletters his mom sent out.
Kay McGee's organization started like a lot of others that now serve adults with developmental disabilities — through the efforts of parents of children with those conditions, said Hebein, who co-founded the National Down Syndrome Congress, now based in Georgia, in 1973.
The work that McGee did helped educators learn that children with Down Syndrome could go to public schools, but "each step of the way, it was convincing principals to bend the rules," Mike McGee said.
Tricia McGee attended a Montessori school and graduated from Oak Park and River Forest High School, said Hebein. She now lives at Misericordia Heart of Mercy, a Chicago home for people with developmental disabilities, her brother said.
But Kay McGee's work helped people with other disabilities as well, according to Hebein. It raised the issue of inequality and offered parents hope at a time when they got mostly negative information.
"It was not just, it was not right that children with Down Syndrome should be sitting at home," Hebein said.
Kay McGee is survived by her children, Mike, Tricia, Martin and Jan; her grandchildren, Jennifer, Adrienne, Carolyn, Peter and Thomas; and many nieces and nephews. A funeral Mass was celebrated at St. Luke Church in River Forest.