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Down Syndrome Information Alliance: Stepping Up to Provide Support

11/22/2017 12:58PM

Festivities at the Step Up for Down Syndrome Walk in William Land Park were ending when three-year-old Landon Wolff found a clearing on the lawn and began hip-hopping to the music, hamming it up for his cheering audience. Others joined him briefly—his mother, his toddler sister, and friends—but Landon remained a motion machine with a smile. 

A generation or two ago, children with Down syndrome, like Landon, didn’t often dance in the sunshine. Many didn’t leave the hospital with their parents. When 16-year-old Gabby Prieto was born, her mother, Heather, heard no cheers, but was advised she could put her baby in an institution. “It was like a dire situation,” Heather recalls. Scared but filled with love, she took Gabby home. 

A person with Down syndrome has three copies of the 21st chromosome instead of the normal two. Humans typically receive 23 pairs of chromosomes—one of each pair from each parent. The extra chromosome causes physical changes, such as small stature and low muscle tone, as well as intellectual disabilities and, often, health problems. It’s the most common genetic disorder, occurring once in about every 700 births. Abilities vary widely, but research has found that when these children grow up in families with education and stimulation, they adjust better and achieve higher intelligence levels than kids placed in institutions.

Shortly after Gabby’s birth, Heather connected with two other families of children with Down syndrome. Noting the benefits of their shared support, the three families formed the Down Syndrome Information Alliance (DSIA), a nonprofit based in Roseville that currently serves seven Sacramento area counties and provides services and information to Down syndrome families through various programs, including a “Down Comforter Package” full of resources for new parents that’s presented at the hospital, parent mentors, a newsletter, speakers, workshops and events. The group also advises medical professionals. Their annual Step Up event is its sole fund-raiser; this year’s walk on October 8 earned nearly $35,000.

Today, Gabby is a thriving sophomore at Rio Americano High School and has been educated with her same-age friends since kindergarten. MacKenzie Muir is also a sophomore (at Whitney High School) and is on the cheer squad, loves school dances and was elected homecoming princess. “She blows us out of the water each year with her abilities,” her mother, Nancy, says. 

All the parents Heather knows are proud of their loved ones with Down syndrome, but she says, it’s normal to feel afraid and even grieve when the baby is born. She urges new parents to contact DSIA for emotional support, as well as information on resources, such as early-intervention programs—which some babies, like MacKenzie, start as soon as they’re six weeks old. 

“Sixteen years ago,” Heather says, “information was very limited. Most of us were scared, so we understand new parents’ fears. But life with a Down syndrome child will be as great as you thought it would be—it will just be different.” 

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