Toledoan featured in national Down syndrome campaignWritten by Brigitta Burks | News Editor | BBurks@toledofreepress.com
The National Down Syndrome Society’s (NDSS) My Great Story campaign, the organization’s largest public awareness movement, features Toledoan Keegan Simms.
NDSS’ My Great Story campaign gives people who have Down syndrome and their loved ones an online outlet to share their stories. The stories are broken down into themes like family, sports and the holiday season. The campaign, which launched in September 2009, has raised $6 million in ad spots and donations. Readers can comment on the stories and vote for the best, which are featured in NDSS’ e-newsletter.
“This time of year especially, we encourage everyone to share their stories,” said NDSS Communications Associate Jordana Stern. “The campaign embodies the holiday feeling we have all year.”
NDSS was founded in 1979 when Elizabeth Goodwin realized she didn’t have the resources she needed for daughter Carson, who has Down syndrome, and decided to create them herself. Carson still volunteers at NDSS, Stern said.
Keegan’s mother, Cindy Rhinevault, learned of NDSS and the My Great Story campaign in her research of Down syndrome. She decided to enter Keegan, who has Down syndrome, heart issues and unilateral hearing loss.
“He has a long list of health problems, but that doesn’t stop us from treating him like a normal child,” said Rhinevault, who works in sales at Sephora.
When Rhinevault was pregnant, she and Keegan’s father, Keith Simms, didn’t know their son had Down syndrome. They found out when he was born.
“I was a first-time mom and I had no knowledge of Down syndrome and the issues that would come up later. They (NDSS) really took me under their wing,” Rhinevault said. Rhinevault now helps NDSS distribute information on Down syndrome to pregnant women or new moms at area hospitals.
Rhinevault also takes Keegan to occupational and speech therapy several times a week. The 3-year-old hasn’t let his health issues slow him down. Keegan, who is “quite the dancer,” learned to walk at 2 and a half years old instead of the predicted 4 years old.
“When he walked, I cried; my whole family cried. I remember that whole day, what I was wearing, the weather outside,” Rhinevault said.
“He’s made me a better person; actually, he’s made his whole family better people. I think we’ve all become more patient and understanding,” she added. Keegan’s sunny disposition also helps.
“He’s got a really great personality. He’s mostly always smiling and waving at people,” Rhinevault said.
To see the campaign, vote on Keegan’s story or donate, visit www.ndss.org/stories.