Ellie’s Extras

Ellie Vernon was born with Down syndrome, a chromosomal condition that affects one in 700 children born in the U.S. Her mother, Abby Vernon, is board president of the Down Syndrome Association of Pittsburgh.

nless you’ve participated before, you may not know that March 21 is a special day for the Down syndrome community. The date, which falls on a Sunday this year, is World Down Syndrome Day, and people all over the world will wake up and put on a pair of bright, mismatched socks to help raise awareness and spark conversations about the condition.

“A chromosome looks like a sock. We all wear socks. And whether they match or not, they keep you safe, they add value, they make a difference,” said Abby Vernon, board president of the Down Syndrome Association of Pittsburgh (DSAP). Vernon lives on Standish Boulevard with her husband, Todd, and her three children, Ellie, Finn and Gus. Her oldest, Ellie, is an 8-year-old Markham Elementary School student and has Down syndrome.

According to the Centers for Disease Control, one in every 700 babies in the United States is born with Down syndrome. Down syndrome is a chromosomal condition, where a person is born with a full or partial extra copy of chromosome 21—we have 23 pairs of chromosomes—causing low muscle tone, small stature or intellectual disabilities, among other traits.

Down syndrome was named after John Langdon Down, an English doctor who first characterized the condition in 1866. World Down Syndrome Day started in 2012 on the 21st day of the third month of the year, signifying the uniqueness of the three copies of chromosome 21.

“Markham really gets behind [World Down Syndrome Day]. They all wear mismatched socks. Now we just need to encourage the rest of Mt. Lebanon to do it, too!” said Vernon.

World Down Syndrome Day, which DSAP usually commemorates by hosting a dance party fundraiser, is just one observance on DSAP’s calendar. In October, which is Down Syndrome Awareness Month, they host their annual Buddy Walk to raise funds for the Down Syndrome Center of Western Pennsylvania.

Located at Children’s Hospital of Pittsburgh of UPMC, the center sees patients in nine clinics throughout the region and connects patients with local organizations and resources such as the Adult Down Syndrome Center at UPMC Montefiore.

COVID-19 forced a change on the Down Syndrome Association of Pittsburgh’s annual Buddy Walk. For the Vernons, this year’s walk was a socially distanced half-mile through their Markham neighborhood.

“Pittsburgh is one of the few cities in our country that provides care for people with Down syndrome from birth to death,” said Vernon. “Most cities have a Down syndrome pediatric clinic, but people with Down syndrome still need support as they age—some can get Alzheimer’s in their 30s. So it’s great that we have this resource.”

Last year, because of COVID-19, DSAP had to get creative and host its 26th annual Pittsburgh Buddy Walk virtually. Normally Ellie Vernon would be walking with her team, Ellie’s Extras, at Highmark Stadium on that day, and the Vernons didn’t want her to miss out.

“We decided, ‘Let’s make it a blast, but here in our neighborhood,” said Vernon.

They promoted it on social media and invited the whole community to wear their masks and join Ellie’s walk. Just like a block party, they closed down the street and brought in a coffee truck and a balloon artist and mapped out a half-mile route through the neighborhood.

To their surprise, the Vernons wound up hosting more than 100 people over the course of the morning, including 20 of Ellie’s teachers and therapists at Markham. Ellie’s Extras took third place in fundraising western Pennsylvania, bringing in over $7,000.

“It was something we could all find harmony with—kids had fun, it was inclusive, we raised awareness … what it symbolized was beautiful,” said Vernon. “This is the Mt. Lebanon I know. This is why I moved here.”

Visit www.dsapgh.org for more information or to donate to the Down Syndrome Association of Pittsburgh.