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'Buddy Walk' makes giant strides

Jim and Melinda Reed lift grandson Jeffrey Miner during walk for people with Down syndrome.
Jim and Melinda Reed lift grandson Jeffrey Miner during walk for people with Down syndrome.
Dan Lund, For The Deseret Morning News

PLEASANT GROVE — Becca Winegar doesn't let her Down syndrome affect her ability to live a normal life. In fact, she hardly even thinks about it at all.

She doesn't think about it as she's attending college, while she's at work or when she's volunteering in the community.

Right now she's working toward her degree in theater at Utah Valley State College with an emphasis in stage directing. She works at Hale Center Theater in Orem and is actively involved in her LDS Institute and ward.

"I think a lot about the other kids," said Winegar, 26. "I interact well with them, and I'm included in all the classes."

Winegar is one of more than 400 people in Utah County who were born with Down syndrome and must deal with all the challenges that come with the congenital disorder.

Some 200 of those people, many of them young children, and their families gathered for a Buddy Walk Saturday afternoon to help raise funds and raise awareness about Down syndrome. Participants with Down syndrome each invited a "buddy" for a one-mile walk around Discovery Park in Pleasant Grove.

Saturday's walk is one of four walks in the state sponsored by the Utah Down Syndrome Foundation and helps kick off Downs Syndrome Awareness Month in October.

"They're great," Lehi resident Tamara Pew said of the walks. "It's a great way to come and meet other families who are going through the same thing you are. It's great to feel the spirit of the love from all these children."

Pew is the mother of eight children, including a 1-year-old boy with Down syndrome.

"I think sometimes people put limits on people with disabilities," Pew said. "Everyone in this world has some kind of disability."

Dance troupes from Performers Always Lengthening their Stride, whose members have Down syndrome, entertained the crowd.

Down syndrome affects nearly 1 in every 850 live births, and since Utah County has one of the highest birthrates in the country, there are more Down syndrome patients per capita than most other places.

"You run through the whole spectrum of emotions," Derek Price of Pleasant Grove said about what it's like to be the parent of a Down child. Price's 3-year-old daughter, Kiley, was born with the disorder, which is caused by the presence of an extra chromosome. "You have feelings of loss at the daughter you expected to have. It's a very big shock."

Kiley is enrolled at a pre-school program at Cedar Ridge Elementary sponsored by Kids on the Move, a federally funded Head Start program designed to aid Down syndrome children.

"Our hope is that she'll be mainstreamed," said Price, who plans to enroll Kiley in kindergarten. "People can't understand that they're just a little different, and that doesn't mean they're bad."

Price said raising a Down syndrome child has its obstacles.

"It's an awareness thing," Price said. "We'll go somewhere and we'll always get the stares. There are a lot of misperceptions. It's just a challenge that she'll face. It's part of the package."

The Utah County's chapter of UDSF sponsors events to teach parents how to advocate for their children. Members participate in bimonthly support groups, summer and Christmas parties to socialize with other families, especially during their child's first five years.

"That's when they feel like they need it the most," said chapter president Cathy Colton, who is the mother of a 4-year-old girl with Down syndrome. "It's kind of an emotional roller coaster."

During the 1950s and '60s, more than 50 percent of Down syndrome patients suffered from heart defects, causing a life expectancy of 9 years for most patients, Colton said. Today's Down children can expect to live into their 40s and 50s, thanks to antibiotics and other medical advances.

"It's getting better now," said Winegar's mother, Brenda Winegar. "When Becca was born, expectations were very low. They told her she'd get to the level of a 5-year-old. We decided, 'No, that's not what we're going to do.' "

Brenda Winegar said she and her husband never stopped giving Becca new challenges, and that has allowed Becca to reach new heights..

"You can't just put Down syndrome in a group that says they can and cannot do certain things," Brenda Winegar said. "They've got the same genes as their parents. They've inherited talents and attitudes. We have to go wherever they are and take them as far as they are able to go."


E-MAIL: csheffield@desnews.com