Liverpool When Shari Bottego moved to the Syracuse area more than 20 years ago, she had a 2-month-old son with Down syndrome and very little knowledge about the condition.
“We knew nothing about Syracuse or Down syndrome,” said Bottego, who now lives in Manlius. “When I was finally settled in and ready to meet other families who have a child with Down syndrome I called the woman whose phone number I was given. She was literally packing up her house and moving out of the area. She said she would refer me to someone else in their group, but that never happened.”
The existing group folded, and a year went by. Bottego and her son, David, were out shopping one day when they were approached by a woman who was part of the original group who was eager to start it up again.
“I said I would be interested, but we would do it the proper way and become a 501(c)(3) not-for-profit organization so what happened before would not happen again,” Bottego said. “That was 21 and a half years ago, and I have been the president ever since.”
Bottego and a number of volunteers run the Down Syndrome Association of Central New York (DSA of CNY), which seeks to educate the community about Down syndrome. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. One in every 691 babies in the United States is born with Down syndrome, making it the most common chromosomal condition; more than 400,000 people in the United States have it. People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives. All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.