By David Kligman
DANVILLE — When doctors told Nathan and Crystal Leiser their third child would likely be born with Down syndrome, they reacted with shock.
“We were scared,” Nathan Leiser said. “It was really emotional. We didn’t know what this was going to look like.”
Crystal Leiser eventually delivered the baby, a girl they named Saige, who was born two years ago with Down syndrome, the random genetic disorder in which a child is born with an extra chromosome.
The family’s angst was greatly alleviated when Saige was about 6 months old. That’s when a friend told them about Down Syndrome Connection of the Bay Area, an organization begun in 1998 that works to encourage the unlimited potential in children and adults with Down syndrome.
Martha Hogan, the mother of a now-38-year-old son with Down syndrome, started the nonprofit in the Contra Costa County city of Danville. The vision for her organization was that people with Down syndrome should be respected and included in our society.
Nonprofit provides an instant community
The Leisers, who live in Martinez, attended a social with other families with young children with Down syndrome. What they found was an instant community and support group.
Last month, the Danville-based nonprofit was named the winner of 7×7′s annual “Bay Area’s Favorite Charities Contest,” based on a public vote.
PG&E sponsored the contest and awarded $10,000 to the winning organization and $2,000 to each of the six finalists (Animal Assisted Happiness, Breakthrough SF, Oakland Emiliano Zapata Street Academy, Girls Inc. of Alameda County, The Bread Project and East Oakland Youth Development Center).
“Winning this contest is humbling because there are so many charities working so hard and doing so much good,” said Nancy LaBelle, executive director of the organization that began in 1998. “It showed us how many people value our services.”
The Down Syndrome Connection of the Bay Area has more than 1,000 members with four full-time employees and 16 more who work part-time on vital and innovative programs.
The organization works with 35 Bay Area hospitals to provide information to new families giving birth or that have received a diagnosis. Staff members also work with medical professionals about the abilities of people with Down syndrome.
They also provide support and teaching strategies to educators in 42 school districts, as well as presentations to students by emphasizing empathy and compassion to students who have classmates with Down syndrome..
Welcoming new families one of most important roles
The organization also offers music therapy for children with Down syndrome and their siblings. For younger children, obstacle courses and activities focus on gross and fine motor skill development.
Among the group’s most important roles, LaBelle said, is welcoming new families.
“We are wrapping our arms around people who have had a diagnosis or just delivered a baby with Down syndrome, providing resources and connection to other families,” she said.
Nathan Leiser said his family found much hope after getting involved with the Down Syndrome Connection of the Bay Area. He referenced the essay “Welcome to Holland” about what it’s like to have a disabled child.
He said Down syndrome wasn’t what his family had planned “but it’s equally as beautiful and exciting.”
“It was comforting to have a resource — not just relying on our doctors or our friends and family that aren’t informed on what Down syndrome is and the impact it will have on our lives,” Nathan Leiser said. “These people really live it every day.”
Email David Kligman at David.Kligman@pge.com.