Family and Friends Run For St. Michael Girl

Friends and family came together to support a little girl with a disease that has taken her eyesight.

The girl at the center of it all is Ava Huggins, the two year old daughter of Megan and Blair Huggins of St. Michael. Megan is a kindergarten teacher at Albertville Primary, and Blair is a social studies teacher at St. Michael-Albertville Middle School East. 

Ava’s condition was not immediately evident at birth. However, by seven months old, Megan and Blair were given the news of a formal diagnosis of LCA – Leber’s Congenital Amaurosis. This disease is a rare, hereditary disorder that leads to retinal dysfunction and visual impairment often as early as birth. Of all the retinal degenerations, LCA has the earliest age of onset and can be the most severe. 

After the diagnosis, Megan and Blair put their efforts into finding a cure. One of the ways they seek to change Ava’s future is with their recent (second annual) Walk With A Vision. This event is a 5K family walk/run heightening public awareness and raising funds to support retinal research. The focus of the Huggin’s support is The Foundation for Retinal Research (FRR). FRR was founded in 1998 and the Foundation offers people the most current medical and research information available.

Now a 2-year-old, Ava functions much like any other plucky, curious, joyful toddler. She does not hold back in fear, and having been affected since almost birth, Ava has adapted to her condition with surprising ease.

“It helps she is so smart!” shares Shelly Peterson, one of Ava’s childcare providers. “She has wowed us since the get-go with the way she figures her world out as fast–or often faster–than other kids.”

Ava’s natural ability and determination to navigate the sighted world and do it as well as any other child – is just one reason hundreds of folks were happy to come out and raise money for the little girl.

The morning of the race, family and friends gathered in Otsego to take part in the 5K run and later the 5K walk. Ava, the person of honor that day, did the race in her stroller and spent the rest of the time being passed from friend to friend.

 “Hi Ava!” greets Shelly leaning down to give Ava a hug. “Where’s Alanna?  Where’s Jodi?” Ava inquires, knowing those women tend to be together when around Ava.  She groups her world by voices, sounds and smells. With each familiar voice, Ava’s face breaks out in a happy smile and she readily identifies those around her.

The 5K race was first with dozens of runners racing in the powder blue “Ava Inspired” team shirts. Blair, Megan and family and friends, gathered around the large clock at the finish line to cheer each runner as they completed the race. The mood was optimistic and joyful with finish times being an afterthought.  The day was about Ava.

Michele Dinh of St. Michael who crossed the finish line pushing a stroller with four young children.

“I am here today with the kids, to show my support for Ava who is a child we all know and love," she said. "It’s great we can do something fun–and together–and help Ava.”

Before awards, Blair introduced another child with the same condition as Ava, whose prognosis included a possible return of vision within a reasonably short period of time. Blair spoke of his desire to be announcing that same news for Ava.

“We really believe,” Blair spoke to the gathered supporters, “that we could stand here someday soon with news of a cure for Ava. Thank you everyone that is working towards this goal with us!”

The crowd answered back in cheers.

Later that morning a 5K walk was held–with several times the number of participants as the early morning run.

Visiting Japanese exchange student Hisako Misawa marveled at the day. “This is so much a wonderful thing. So many people here not even Ava’s family – so many people come here to help one child. A wonderful thing and so much they must love this child!”

Totals for the end of the day reached $10,265 to be put towards research in finding a cure.