McALLEN -- Over 250 families and more than 2,000 individuals enjoyed an unusually brisk morning in the fifth annual Step Up for Down Syndrome Awareness Walk at the McAllen Sports Park.
Deborah Tomai, president of the Rio Grande Valley Down Syndrome Association, has a six-year-old son with Down Syndrome. When he was first diagnosed, like many mothers, she wondered “what life might look like for him.”
In 2012 she began meeting with seven other families that also had young children with Down syndrome. Over coffee or potlucks they’d share advice, experiences and answers to some of the questions parents of children with special needs often have to find out on their own.
“About 50 percent of children with Down syndrome are born with some form of heart defect,” she said. “So when you have a little one who’s having medical complications, you really want to talk to someone who understands... Also, with education there’s a lot of decisions you need to make, and it’s good to have people to bounce ideas off of.”
In 2013 the group grew to 15 families, who would eventually make up the RGV Down Syndrome Association. That year, they decided to host an awareness walk, not expecting much of a turnout.
“We thought maybe a couple hundred people there,” she said. “Over a thousand people showed up that year and we went from having 15 families to 60 families in a day.”
Four years later, they now also have the support of Congressman Vicente Gonzalez (TX-15), who earlier this year supported the ABLE to Work Act, an amendment to the Internal Revenue Code that allows individuals with disabilities to make more money without losing medical benefits.
“It’s not Down syndrome that has hurt our communities it’s the antiquated laws that we have in place,” he said in a brief speech after the walk. “I am proud to support bipartisan legislation like the ABLE to Work Act but I know that more work needs to be done to level the playing field.”
Before the ABLE to Work Act, legislation barred people with disabilities from having more than $2,000 dollars in savings or making more than $700 a month or else they’d lose their social security and medicaid benefits, leaving many stuck in poverty.
Tomai said this kind of legislative support is ultimately what helps the families of people with Down syndrome.
“It makes a huge difference, and it gives me a lot more hope for my son’s future,” she said.