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Buddy walk spreads awareness

Community gathers for Down Syndrome Awareness Month

POSTED AT 11:56 PM ON Oct. 7, 2012  (UPDATED AT 12:01 AM ON Oct. 8, 2012)

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Five-year-old Becca Johnson, her face painted like a butterfly, squirmed as her father, Kaj, pulled a large “Buddy Walk” T-shirt over her pink jacket and colorful dress.

“You’re going to look like a linebacker,” Kaj said, referring to Becca’s many layers.
“Linebacker Boo!” her grandmother Rebecca Robertson cheered.

Becca’s family calls her Becca Boo to distinguish between Becca and her grandmother, for whom she is named.

Becca has Down syndrome, a genetic condition in which an individual has a full or partial extra copy of chromosome 21, which alters development, according to the National Down Syndrome Society.

One in 691 children are born with it, making it the most common chromosomal condition.

The NDSS began the National Buddy Walk program in 1995 to celebrate Down Syndrome Awareness Month each October. There are now more than 250 Buddy Walks across the country.

At the fifth annual Bloomington Buddy Walk on Sunday in Bryan Park, Becca’s team of buddies included her parents, grandparents, aunt, cousins, therapist, dance instructor and more.

Kaj is a professor of geological sciences at IU, where Becca attends speech and hearing therapy.

Becca’s mother, Cyndi, was one of the founders of Down Syndrome Family Connection, the nonprofit Down syndrome support organization that sponsors the Buddy Walk in Bloomington.

She said some Down syndrome babies are born without any medical issues. They might have cognitive deficiencies but are healthy otherwise.

Becca is not so lucky. She has bilateral hearing loss and poor vision as well as heart and colon problems. But the Johnsons are coping.

Becca’s had several procedures to manage her issues and is learning sign language. Cyndi said Becca has already learned between 300 and 400 signs.

Kaj and Cyndi have two other children, Aidan, 7, and Leah, 2. Becca is the only child in the family with Down syndrome.

“It’s a joy and a challenge, just like all parenting,” Cyndi said. “First and foremost, she’s a kid. She just happened to have what I like to call the bonus chromosome.”

Cyndi said she spends most of her days trying to determine how to best meet Becca’s needs. Cyndi’s goal is to help Becca be as independent as possible.

Becca does gymnastics and takes tap and ballet lessons at The Dance Center, where she is the only child with Down syndrome in her class. She has performed on the Buskirk-Chumley stage.

Mary Sue Hosey, Becca’s dance instructor, said Becca is limber and can do perfect splits and somersaults.

“I had never worked with a Down syndrome child before,” Hosey said. “She’s wonderful.”

Robertson said Becca loves to read and play hide and seek.

Becca is one of Robertson’s nine grandchildren. Robertson lives in Scottsburg, Ind., but visits Becca and her siblings once a week. Becca calls her grandmother “Gammy.”
“I’m a professional grandma,” Robertson said. “That’s what I do.”

Before and during the Buddy Walk, Robertson had her hands full keeping track of the children. Bryan Park was buzzing with activity.

The event featured two bounce houses, carnival games, a live band and refreshments. Becca played games and went in one of the bounce houses.

Becca’s occupational therapist, Ashleigh Cummings, attended the event with her daughter. Cummings has worked with Becca since the girl was two months old. They work on her fine motor skills, self-care skills and other skills such as writing her name and cutting with scissors.

Cummings said she loves working with the children, though it is challenging.
“They don’t always do what you want them to do,” she said. “Sometimes it takes a long time, but it’s very rewarding.”

The walk began at 3 p.m., and the band played Stevie Wonder’s “Superstition” as the crowd of hundreds made their way toward the Bryan Park arches to follow the roughly one mile path.

The Bachelor Middle School and Bloomington High School South cheerleading squads performed special Buddy Walk routines on the sidelines, cheering for the crowd.

Cyndi lifted Becca and walked with her little girl on her shoulders at the beginning. Becca gave out high fives and fist bumps from her perch atop her mother.

From time to time, Becca climbed down and walked by herself, holding hands with her grandmother, her aunt or her dad.

She strayed from the path occasionally to play in the grass with her siblings and cousins. As she walked, her team cheered, “Go Boo!”

And whenever she got tired and didn’t want to walk anymore, her family was there to carry her.

 

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