by Bob Grawey
As the second annual Ava Inspired 5K Walk-With-A-Vision event nears, just like its namesake, Ava Huggins, it has grown and gone through changes since its inaugural run last year.
At the time, Ava was 14 months old and was just learning to walk. Words were few then.
Now she is walking everywhere with no problem and getting used to her white sight-aiding cane, something she will come to depend on as parents, Megan and Blair
Huggins, transition her into more mainstream activities.
Ava talks non-stop now, too, as she appears to take her cane for a walk around the house.
Both parents are teachers and their skills are evident, as the 2-year-old answers questions about everything from the alphabet to U.S. and Minnesota politicians.
Ask her who the current president and vice president are and she will tell you first and last names. Ava also knows some of the past U.S. presidents and can recite the preamble to the Constitution. She can also name the Minnesota senators and her U.S. representative.
Sitting in her highchair, Ava plays with four Disney figurines. All seem identical in size and shape. Each figurine’s hair color and the color of each one’s dress are the only differences, but pick one up and hand it to Ava and she somehow knows the difference between Snow White, Belle, Cinderella and Sleeping Beauty.
Music and books are things this little girl loves, as well as play dates so she can play with friends.
This is part of Ava’s world.
Megan and Blair have tried to make their daughter’s life as normal as possible for someone born without sight. They added swimming lessons and gymnastics to Ava’s schedule.
It is not enough, though. They want more for their little girl.
The couple wants to make as many people as possible aware of Ava’s disease, Leber congenital amaurosis (LCA).
It is a rare disease with only 3,000 known cases in the United States. That is a 1-85,000 ratio. For Ava, it is a world without color or any kind of visual stimulation or detail.
This year, the Hugginses hope a new partnership with Otsego JamFest will increase visibility for their event and heighten awareness of LCA. They would also like to double last year’s totals.
Moving from Prairie Park, the event will take place at JamFest, located at the corner of County Road 39 andParish Avenue. The run and walk leave JamFest on Saturday, Aug. 6, at 9 and 10:30 a.m. respectively and loop through Otsego to finish back at JamFest.
Official times are part of the change this year, as well as Braille medals the Hugginses are working to secure for first-place finishers in the men’s, women’s and children’s categories.
So far, 200 have registered for the run and walk, and just over $6,000 has been raised to date for the event.
As with last year, all proceeds from the 5K will go to the Foundation for Retinal Research.
Megan says stem cell research at the University of Iowa is making great strides and that she was told recently that it is medical staff’s belief that Ava could have her sight in 10 years.
To register for the second annual Ava Inspired 5K Walk-With-A-Vision, go to www.avainspired.kintera.org.
Registration can also be done at www.otsegojamfest.com.