The Terry family would like to extend a heartfelt thank you to the Times Union, and staff writer Cathleen Crowley, for featuring the following story on the front page of their Sunday newspaper!!
Lives filled with potential
Down syndrome community salutes GOP's Palin, who has infant with condition
By CATHLEEN F. CROWLEY, Staff writer Click byline for more stories by writer. First published: Sunday, September 7, 2008
Kandi and Daniel Terry never tested their unborn baby for a genetic disorder because the outcome wouldn't change anything, Kandi Terry said.
The couple vowed from the start that they would love the baby no matter what. In January, their son, Nathan, was born with Down syndrome.
"I'm not going to say it was easy," Kandi Terry said.
The East Greenbush couple embraced their son, and they praise the family of Sarah Palin, Alaska's governor and the Republican nominee for vice president, for doing the same. Capital Region families touched by the genetic disorder believe Palin will raise awareness about Down syndrome, and hopefully, change attitudes about the condition.
"Listening to her speech (at the Republican National Convention), the part that really impressed me the most was when she referred to her son, she referred to him as a joy," said Diane Lange, executive director of the Down Syndrome Aim High Resource Center in Albany. "She doesn't use the word 'burden' or things like that. It's important for the public to hear, because I've heard people in the news (media) say 'and unfortunately, her fifth child was born with Down syndrome.' "
Down syndrome is one of the most common genetic disorders. About one in every 733 live births results in a child with the condition -- about 5,000 births in the United States and 500 in the Capital Region each year.
Palin learned her son, Trig, now 4 months old, had Down syndrome when she was pregnant. Other than her husband, she didn't tell anyone. After his birth, she released a statement saying, "We have faith that every baby is created for good purpose and has potential to make this world a better place. We are truly blessed."
Terry learned about Palin's son while she was researching the syndrome after Nathan's birth, so she recognized the name when her husband broke the news of Palin's nomination.
"I know the impact she will have if she gets into the White House -- and I believe she will," Terry said. "She will be a voice for those people whose voices may not have been heard loud enough."
Daniel Terry is an electrical contractor and Kandi Terry is a political analyst for the state Senate and an instructor at Hudson Valley Community College. Kandi Terry immersed herself in the research about the syndrome. Four months after Nathan was born, she was sworn in as a board director at the Aim High Resource Center.
She maintains a blog about her firstborn child (nathandanielterry.blogspot.com) to educate people about raising a child with Down syndrome.
Now that the spotlight is on Palin, advocates in the Down syndrome community have distributed tip sheets to the media with recommendations on the proper language to use when talking about the disorder -- they discourage the word "disease."
The national organization prefers Down syndrome instead of Down's syndrome, noting most dictionaries list both but the apostrophe 's' connotes ownership or possession. The English physician John Langdon Down characterized the condition, but did not have it, the sheet says.
Do not say people "suffer from" or are "afflicted" by Down syndrome, it says.
"You know what kind of image that projects," said Lange, who has a 22-year-old daughter with Down syndrome. "Certainly individuals with Down syndrome are living very full lives, and it's offensive to them and their families to hear language like that."
Brie Nobis, 27, of Guilderland agrees. Nobis, who has Down syndrome, lives on her own, works in the mailroom of the adoption unit of the state's Child and Family Services department, and is engaged to be married.
"I believe that Down syndrome is normal," Nobis said. People with the condition "may look different and act different, but we have a life just like other people."
Children with Down syndrome are born with three copies of chromosome 21, instead of two. The genetic abnormality causes cognitive impairments and health problems that often affect the heart and lungs, and vision and hearing.
Palin's run for vice president will educate people about the syndrome, said Dr. Harm Velvis, a pediatric cardiologist who is the father of a 17-year-old daughter with Down syndrome. He is president of Aim High.
"Seeing this family in the spotlight can take some of those misconceptions away," Velvis said.
The myths are that people with the syndrome live in institutions, die young and do not contribute to society. The truth is, said Velvis and Lange, most live with their families, survive into their 50s and 60s and can give back.
"It's the attitudes that need to change more than anything," Lange said. "Just an openness in people's thinking that individuals with Down syndrome can live, work and play in their own communities and have potential."
Cathleen F. Crowley can be reached at 454-5348 or by e-mail at firstname.lastname@example.org.