At 23, Tinsley Hess holds down two jobs, loves Clay Aiken, goes to the mall with her friends and plays golf every weekend.
Oh, and she has Down syndrome.
Down syndrome, a chromosomal disorder seen in one in 800 live births, causes mild to moderate retardation and other medical problems. The Cary resident and her family say her condition is a fact of her life but not the defining one.
"She's Tinsley," Dona Hess said last week, sitting outside with her daughter at a Cary restaurant. "She just happens to have Down syndrome and we don't dwell on it. It's a fact of life."
The Hesses are one of many area families that have been helped by the Triangle Down Syndrome Network, a support and awareness organization marking its 10th anniversary. Sunday, the Hesses will be working with other families to expand the network's resources, participating in Buddy Walk to raise money for a residential center that would house people with Down syndrome.
The vision for the new community is based on communities such as a New York program called Pathfinder Village. Founded in 1980, Pathfinder Village is a private nonprofit community that's home to about 80 people with Down syndrome. Residents live in a cluster of apartments that provide varying levels of support and care. Many who live there work nearby.
For supporters of Triangle Down Syndrome Network, the residential community would meet a growing need in the area among people with disabilities.
"The people that founded this organization are looking another 10 years down the road, when they will have young adults looking for a place to grow and expand their capabilities," said Martin Osterhout, chairman of the board of directors for the Triangle Down Syndrome Network. "It would be a living community where they can get a job, or close to a place where they can get a job that meets their skill level, so they can live independently."
Longer, productive lives
Advocates say it's increasingly common for people with Down syndrome to function as Tinsley Hess does, using job skills to find a place in the wider community.
"There is much more early intervention and targeted education going on, and there is a greater interest in employment opportunities for people with Down syndrome," said Lori Grace, spokeswoman for Pathfinder Village. "People are out and about in society, mixing with their peers."
The Hess family moved to North Carolina from Poughkeepsie, N.Y., when Tinsley was going into third grade. Early on, she had some of the health problems associated with Down syndrome.
"She had a congenital heart defect and had open-heart surgery when she was eight months old," Dona Hess said.
Tinsley Hess attended public schools, taking roughly half special-education classes.
Along the way, she earned a second-degree black belt in Tae Kwon Do and took trips to Walt Disney World and Six Flags Over Georgia as an alto in her high school chorus.
"I graduated from high school!" Tinsley Hess said.
Beginning in 2000, North Carolina set up an occupational course of study, allowing a new chance for some special-education students to earn diplomas.
"She was in the first class [at her school] to get an occupational course of study diploma," she said.
Tinsley's life is built around concerns typical of people her age, complete with college football loyalties.
"I'm a State fan," she said. "I watch all of their games on TV."
Dona Hess said she is excited about the opportunities available to her daughter and hopes that additional avenues open for others.
Members of the network say the community they want to build would provide a secure home for people with Down syndrome, as they live longer, productive lives.
"I think the world is changing," she said. "It surprises me how many people Tinsley has in her life. Sometimes people go out of her way to talk to her, and I think it's because she has Down syndrome."
thomas.goldsmith@newsobserver.com or 919-829-8929 To see more of The News & Observer, or to subscribe to the newspaper, go to http://www.newsobserver.com. Copyright (c) 2008, The News & Observer, Raleigh, N.C. Distributed by McClatchy-Tribune Information Services. For reprints, email tmsreprints@permissionsgroup.com, call 800-374-7985 or 847-635-6550, send a fax to 847-635-6968, or write to The Permissions Group Inc., 1247 Milwaukee Ave., Suite 303, Glenview, IL 60025, USA.
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