Ava McKelvey is just like millions of other 4-year-old girls in America: Her favorite movie is Frozen, her favorite colors, purple and pink, and she is a huge Taylor Swift fan. She loves to swim and to go shopping, and, according to her mother, Maggie, Ava is really, really into baby dolls.
"She is really girlie, about as girlie as you can get," Maggie said.
Ava also has Down syndrome, a genetic disorder that affects one in 700 births in the United States, according to the Centers for Disease Control and Prevention, and can cause a number of mental and physical challenges. None of those challenges however, keep Ava from being part of the regular pre-school class, according to Maggie.
"She is included in everything, as everyone with Down syndrome should be," she said. "They should just be part of the community. They have so much to offer it's just so wonderful when your community can be brightened by these wonderful people."
Not everyone is aware of Down syndrome and how integrated people with it like Ava can be, and that's why Maggie and her husband Matt came up with a way to spread the word in her community. April 11 will mark the first Ava's 5K for Down Syndrome in Mount Airy.
"We really just wanted to do something in our local community that fosters the idea of inclusion and brought awareness to Down syndrome," Maggie said. "What's neat about this race is that it runs through the new rails to trails section of Mount Airy that they have just completed. There is the 5K and then a one mile run/walk that we are doing as well."
The race will begin at 8 a.m. at Watkins Park, the course taking runners through downtown Mount Airy, onto the newly completed trails that traverse a former railroad bed, and then return to the park for the finish. Registration is available online now at http://www.active.com/mount-airy-md/running/distance-running-races/ava-s-5k-for-down-syndrome-2015 and is $35 per runner, including a race T-shirt. That price will go up to $45 after March 1, according to Maggie. Registration for the one mile run/walk is, and will remain, $20.
Proceeds from the race will go toward the National Down Syndrome Society advocacy group and Family Resource, Information & Education Network for Down Syndrome, or F.R.I.E.N.D.S, a Down syndrome support group based in Frederick.
"We have about 125 families ... and we offer personal grants, education grants ... different support for families," said Evan Routzahn, a F.R.I.E.N.D.S. board member. "We also do a large teacher conference, bringing in speakers from across the country to help educators be better informed and learn better techniques to work with our children with Down syndrome in the school systems."
The National Down Syndrome Society is involved in advocacy at the national level, according to Mark Price, the organization's vice president of communications and marketing, but he said the basic mission of introducing people to the fact that people with Down syndrome can be productive, integrated parts of their communities is a constant, and often a simple function of spreading the word.
"You can goes years without meeting someone with Down syndrome; it is not as common as autism, where it's one in 68 people that are born with it," he said. "Our mission is to be the national advocate for the acceptance and inclusion of people with Down syndrome. We want to make sure people understand that people with Down syndrome are the same as everyone else. They have limits, but so does everyone else."
Down syndrome is chromosomal disorder, according to Priceman. A person with Down syndrome is born with a third copy of the 21st chromosome, one of the 46 packets of DNA in every human cell. Most people have two copies of each chromosome, 23 pairs, but the third copy in people with Down syndrome can lead to developmental and cognitive disabilities, according to Priceman.
Those disabilities, however, are just one set of challenges, like the challenges anyone faces in life, according to Priceman, and people with Down syndrome can meet those challenges just like anyone else.
"One of our board members is 32-years-old, has Down syndrome and she testified in front of the Senate," he said. "How can someone with Down syndrome do that? How can anyone do that? It's nerve wracking."
Routzahn, of F.R.I.E.N.D.S. agrees with Priceman and with Maggie McKelvey. His daughter also has Down syndrome and he hopes that as she grows, she will be embraced and included by her community as another member with something to contribute. He sees events like Ava's 5K as much more than a fundraiser, but also as a chance to begin introducing people with Down syndrome to the community to help ensure the community knows and embraces them.
Routzahn will be running in the race.
"I think this race is great for making the community more aware of people with Down syndrome, how they can be more integral members of our communities, not just farmed out to an institution," he said.
"You will see them at church, at the supermarket and that unfamiliarity is gone. Instead of just trying to educate our children, we also want to educate the community on what our kids have to offer."
Reach staff writer Jon Kelvey at 410-857-3317 or jon.kelvey@carrollcountytimes.com.
If you go
What: The first Ava's 5K for Down Syndrome
When: 8 a.m. April 11
Where: Race start at Watkins Park on Md. 27 in Mount Airy
Cost: 5K is $35 until March 1, then $45 including day of registration; One mile run/walk $20
For questions about Ava's 5K for Down Syndrome, send email to avas5kfordownsyndrome@yahoo.com or call 301-473-3317. For more information or to register, go to http://www.active.com/mount-airy-md/running/distance-running-races/ava-s-5k-for-down-syndrome-2015 or visit the race Facebook page at http://www.facebook.com/avas5kfordownsyndrome.
