When parents learn their child has Down syndrome, they often go through a spectrum of emotions—from shock and disbelief to fear and guilt. For some, the diagnosis comes during prenatal testing; for others, it may arrive weeks after the baby is born. William Hamm and his wife, Teresa, received their son David’s diagnosis when he was two weeks old.

“We found out in prenatal testing that David had an atrioventricular septal defect (AVSD), which is a heart defect that is common in people with Down syndrome,” Hamm said. “It was a roller coaster of emotions.” 

Down syndrome, which occurs randomly, is a genetic condition that occurs when a person has an extra copy of chromosome 21. The additional genetic material affects the development of the body and brain, leading to a range of physical and intellectual challenges. According to the Centers for Disease Control and Prevention (CDC), it occurs in all racial and ethnic groups, but is most common among Hispanics, followed by white people, with Black infants having the lowest rates. The CDC estimates that about 1 in every 640 babies in the U.S. is born with Down syndrome.

Hamm said he was afraid when they received the diagnosis. He thought about his son’s future and what their lives as a family would be like. They also have a son, Michael, who is 3 years older than David.

He searched online for any information he could find. He came across the Virginia Down Syndrome Association (VDSA).

“It was the first organization that we reached out to after receiving David’s diagnosis,” Hamm said. “A volunteer reached back out to us the same day, and we’ve been off and running with VDSA ever since.”

Hamm had reason to be fearful about David’s diagnosis. His aunt, who died young, had Down syndrome, marking a family history. Knowing that Down syndrome is not hereditary, he believes it’s likely a coincidence.

Medical and technological advances that have allowed people with Down syndrome to live longer have put some of Hamm’s fears to rest.

“VDSA had a group for dads, and one reached out to me that same day, too,” Hamm said. “He told me about the good life experience he was having as a parent of a child with Down syndrome, which immediately made me feel better.”

David, now 5, plays soccer, loves ice cream and gets along with his older brother. He’s looking forward to his birthday this week, when the family will have a party with a Slip ‘N Slide in the backyard.

“David is the easiest kid to raise,” Hamm said. “He’s very loving and empathetic. He consoles his brother. He’s quick to laugh when everybody’s laughing, even when he doesn’t understand the joke.”

What’s your hometown? I was born in Goldsboro, N.C., and I currently live in Henrico. We moved to Richmond in 2016 because we didn’t want to raise kids in New Orleans.

Where did you go to school? I attended North Carolina State University, where I earned a bachelor’s in Spanish language and literature.

What do you do for a living? I’m an actuary. I enjoy working with numbers and finance.

What is Down syndrome? It’s a genetic condition caused by the presence of an extra full or partial copy of chromosome 21. Humans typically have 46 chromosomes in each cell, arranged in 23 pairs, but individuals with Down syndrome have 47 chromosomes.

What is the Virginia Down Syndrome Association? VDSA is a nonprofit focused on improving and enriching the lives of individuals with Down syndrome and their families, founded as the Down Syndrome Association of Greater Richmond in 1983. One of the founders has a daughter who now serves on the board.

What kind of programming and assistance does VDSA provide? Education, outreach, early childhood development, job training, awareness and fun. We have about 10 staff members who work with the community. They coordinate with local organizations to host art projects that encourage people to get out of the house. We work with schools to provide advice. Our staff members reach out to parents to educate them about Down syndrome—whatever it takes to bring people into the fold.

What has it been like working with VDSA? I got involved after my son David was diagnosed with Down syndrome two weeks after he was born in summer 2019. It’s been incredibly meaningful to see the direct impact of programs like our Summer Employment Academy, where we work with local businesses to provide on-site job and skills training to adults with Down syndrome. In October 2023, I was elected board president.

What is your goal as board president, and what’s your biggest challenge? My top priority is outreach to all individuals with Down syndrome across the state. Our connections to our community are what make us successful. Fundraising is our biggest challenge.

Are you looking for volunteers at VDSA? Yes! We always need volunteers and committee members! There are several ways to get involved. Anyone interested in working with us or helping with fundraising can call us. Our amazing staff can get you involved in a number of ways. There’s also information about volunteering on our website, virginiadsa.org.

  

What is “Dancing with the Local Stars?” It’s our third annual event on June 12 at the Altria Theater, where individuals with Down syndrome will dance alongside a local celebrity to raise funds for VDSA.

The evening begins with a cocktail hour and silent auction, followed by dinner. A family is chosen to give testimony during the dinner, which is always a heartwarming moment. We have games to keep people entertained, and then there’s the five-minute dance routines, choreographed by the nonprofit dance group Miracles in Motion, which offers specialized dance classes for individuals with disabilities. People can vote with their dollars. We end the evening with an open dance.

It’s one of my favorite nights of the year. The energy at this event is through the roof. It brings business leaders together with our Down syndrome community in an outpouring of support, excitement and slick dance moves.

How can people support “Dancing with the Local Stars?” Tickets are $125, and raffle tickets (payout is half the pot) are available. People can donate to a team of dancers on our website, virginiadsa.org.

Who are some of your favorite recording artists? Smashing Pumpkins, Outkast and Amy Winehouse.

How does your day begin? Focused, but I need coffee. 

How would you describe yourself? Analytical, independent and stubborn.

Who is your dream dinner party guest? My Aunt Lila, who had Down syndrome. She passed away when I was just 4 years old. Knowing what I know now, I would have loved to have had a better chance to know her.

What is something you love to do that most people would never imagine? I love to bake, especially sourdough boules.

What’s a quote that inspires you? “Success consists of going from failure to failure without loss of enthusiasm” by Winston Churchill.

Who inspired you the most? My parents.

What book influenced you the most and how? “Mere Christianity,” by C.S. Lewis. It’s the best introspection on the Christian faith that I’ve read.

What are you reading now? “2666” by Roberto Bolaño. It’s a tedious novel about a mysterious German author hiding in Northern Mexico amidst a string of murders.

What’s your next goal? For June, my goals are to help finalize VDSA’s fiscal year budget, prepare for our quarterly reporting cycle at my day job, run a lot of miles and successfully transition my kids from the school year to summer camps.