Five months before Mike Adams’ first child, Addison, was born, he was given the devastating news that she would only live for a week due to a major heart defect. A month later, they learned she had Down syndrome as well. Adams recalls having Addi baptized at the hospital, taking her home, and having a photographer take photos so they would have memories of her. Against all odds, Addi made it past the first week, the first month, and then six months. Today, Addi is an active 15-year-old who takes hip hop lessons, is a student manager for her school’s basketball teams, and is in Elite Cheer’s adaptive cheer program. To this day, Addi’s cardiologist still says he can’t believe that Addi proved him wrong.
With each passing small milestone, the shift began to focus from Addi’s potential passing to living with her condition. Other than a surgery to put in a feeding button and another surgery to later remove it, Addi has not had any other procedures. Heart surgery isn’t an option with her condition, Atrioventricular Septal Defect (AVSD), in which her blood does not circulate as it normally should, leaving her with low oxygen levels. Addi has had to self-regulate her activity and learn her limitations. Adams keep oxygen in his truck for when “her legs are sore” as she describes it, and is the first sign that she needs oxygen. The next milestone Adams is preparing for is Addi’s freshman year at Elkhorn South High School.
When Addi was three years old, Adams realized he wanted to find a community to help address her Down syndrome needs and support other kids who have disabilities. In 2008, he connected with another father, Tony Bisignano, who had a six-year-old son, Ryan, with Down syndrome. They decided to start a group specifically for dads and started under the Dads Appreciating Down Syndrome (D.A.D.S.) national organization out of Indiana. It later became its own separate 501c (3).
Once a month, a group of 12-15 dads gathers at a local sports bar to serve as an outlet for fathers to share concerns, ask questions, and ideas about their children, covering topics that include medical, academic, social, and others. “It’s no secret that men don’t open up and share problems,” Adams said. “But it’s an informal group, and we have kids at all stages, from newborns to out of high school, so we can provide guidance for parents. We joke that we’re all members of a fraternity that we never planned on joining.”
D.A.D.S. tries to bring in a speaker for each meeting, which in the past has included lawyers to speak on special needs trusts, speakers from the Special Olympics, and speakers from the Ollie Webb Center in Omaha. They also plan annual family events, such as sports outings, camping in the summer and holiday parties in the winter. To provide these activities to families free of charge, D.A.D.S. holds an annual golf fundraiser called Divots for Down Syndrome. This year marks the 10th year, with the event scheduled for Thursday, Sept. 17th at Indian Creek Golf Course. Sixty-two golfers participated the first year and 152 participated last year. Adams hopes to have 200 golfers at this year’s event, which will include a BBQ dinner, raffle prizes, and a silent auction. Sponsorships and donations are critical to the success of the event, which has a goal to raise $15,000 to help support the organization’s monthly support meetings and annual family activities.
A separate project close to Adams’ heart is the work he’s done to get a bill passed for a Down syndrome awareness Nebraska license plate. He started on it two years ago, and the bill is expected to pass in the coming legislative session. “It’s just one of the little things I’ve tried to do to bring awareness to individuals with Down syndrome.”
Adams’ goal with D.A.D.S. is to get more fathers and caregivers in general to join their monthly meetings. He said there are close to 500 families with kids with Down syndrome in Omaha, and his group is always trying to find ways to reach out to new parents. “We are very laid back and often start our meetings by talking about sports,” he said. “And it doesn’t have to be a dad. We welcome moms too. We just want to be an outlet for caregivers of kids with Down Syndrome.” To become a sponsor, donate an item, or register a team for the Divots for Down Syndrome fundraiser, visit
www.dadsomaha.org.
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