
On Sunday morning in the middle of New York's Times Square, the famous Panasonic Astrovision screen will display 215 photographs of children, teens and adults with Down syndrome participating in a variety of everyday activities.
The photo display, coordinated by the National Down Syndrome Society, marks the start of Down Syndrome Awareness Month and makes the point that those who have the condition -- some 350,000 in the United States -- are active at home, at school and in the community.
Photos of three local children are included in the display. They are Benjamin Allison, 16, of Sharpsburg, who is shown horseback riding; 18-month-old Claire Barclay of Cranberry, sharing a smile with her grandfather, and Chloe Kondrich, 4, of Beechview, enjoying a book.
Chloe Kondrich and her family -- father Kurt, 44; mother Margie, 45, and 8-year-old brother Nolan -- will travel to New York to enjoy the festivities in Times Square, then board a bus for Central Park where they will participate in a "Buddy Walk," an annual fundraising event sponsored by National Down Syndrome Society affiliates in New York and 275 other cities.
For Kurt and Margie Kondrich, the high-profile celebration of people with Down syndrome contrasts with the inner journey that their daughter has taken them on -- a road with unexpected turns, especially in regard to Mr. Kondrich's occupation.
Chloe Kondrich was born in May 2003 with Down syndrome, a genetic condition that results from having an extra copy of chromosome 21. The extra copy affects cognitive and physical development, in degrees ranging from mild to severe. Certain medical conditions, such as heart disease, are also more common.
Between 800 and 1,000 babies are born with Down syndrome each year. The chance of having a baby with Down syndrome increases with the mother's age -- from about 1 in 1,250 for a woman of 25 to about one in 100 for a woman of 40.
At the time of Chloe's birth, Mr. Kondrich was a police officer with Pittsburgh's community-oriented police unit. For the previous decade, he had been a familiar figure as a bicycle cop in several city neighborhoods. He also went into schools to talk to students about avoiding gangs and illegal drugs.
Although he thrived in the job, he decided to leave the police force after Chloe was born. At the time, he could not have predicted that his newborn daughter would lead him to a career as a developmental specialist.
Like all children under the age of 3 with developmental delays, Chloe was eligible for state-funded early intervention services in the home. These services are carried out by a team of therapists and other professionals who work directly with the child and provide information and support to the family.
Aware of the positive effect of person-to-person contact in community policing, Mr. Kondrich began to notice something similar among the professionals who came into their home in those early days. He described their regular visits as a "bright light" during a time when he and his wife were coping with dramatically new responsibilities. "It was tough," said Ms. Kondrich.
"Early intervention is there for the families as much as for the child," explained Mr. Kondrich. "It showed us what we could do. I saw how critical it is for parents to establish a vision for their child, to lay out a foundation."
The positive attitude of the early intervention team also impressed him. "I believe that if you don't catch that optimism and hope in those first few months, it is going to be very difficult to get through the many transitions ahead of you."
Convinced of the importance of the work done by these professionals, Mr. Kondrich joined the countywide council on early intervention and later was appointed by the governor to serve on the 15-member statewide advisory group.
Noting his strong interest in the field, a faculty member in Pitt's graduate program in early intervention encouraged Mr. Kondrich to enroll. It was a leap for a person with an undergraduate degree in criminology, but he did so, and will complete his degree in December. For the past year, he has worked at Achieva as an education advocate for students with disabilities, a job that puts his police-honed mediation skills to good use.
"Chloe brought all these things to us," said Mr. Kondrich. "She propelled us into understanding the most vulnerable members of our society." An unabashedly religious man, he added, "God orchestrated this."
In addition to the work of early intervention providers, children with Down syndrome and their families are supported in the region by a medical specialty center at Children's Hospital of Pittsburgh and the Down Syndrome Association of Pittsburgh, a volunteer organization.
Sheila Cannon, parent of a 21-year-old daughter with Down syndrome, is the link between both efforts and the go-to person for all Down syndrome issues. As a founding member of the volunteer group in the late 1980s, she and other parents advocated for the establishment of the specialty center at Children's.
"Down syndrome is one of the most common genetic conditions, yet at the time there were no specialized services here in Pittsburgh," said Ms. Cannon, who has served as the center's coordinator for the past 13 years.
Dr. William Cohen, a developmental and behavioral pediatrician, has been director of the specialty center since 1990. Four years ago, services for adults with Down syndrome were added at UPMC Montefiore under the direction of Dr. Peter Bulova.
Ms. Cannon reflected that Down syndrome and other conditions often take parents on an unexpected journey. "Our children really give us a new direction in our lives. It certainly happened to me."
"Parents of children with Down syndrome go through a process of grieving, but at some point, the diagnosis becomes less of a focus, and they start to really see their child as a person, not a medical condition."
In Pittsburgh, the 13th Annual Buddy Walk will begin at 1 p.m. Oct. 20 in Hartwood Acres. Registration, $20 per household, is at 11 a.m. For more information, call Sheila Cannon at 412-692-7963.
