You’ll Never Walk Alone

by Laura Breen Galante

In November, Johanna Cilenti proudly completed her second marathon, and it was a big one: the TSC New York City Marathon. And while that’s quite an accomplishment, her reason for running is what’s truly remarkable.

Johanna, a teacher at Lawton Elementary School, ran to raise money for the National Organization for Rare Disorders (NORD), a nonprofit that serves as the voice of the rare disease community.

She chose to support NORD and its work because of her nine-year-old daughter Ava, who has a rare condition called anophthalmia – a birth defect characterized by the absence of one or both eyes. In Ava’s case, she was born without her right eye. 

“I wanted to help families who might one day be in the same boat we were in nine years ago,” says Johanna.

She and husband Anthony, a sergeant with the Maitland Police Department, learned about anophthalmia for the first time at Ava’s birth. The news of Ava’s diagnosis came as a shock to the Casselberry couple.

“Because rare diseases are, let's face it, rare, it is hard to find support groups, funding, research, and just plain knowledge about their conditions,” says Johanna. “We felt like we were struggling with this alone.”

Doctors rattled off discouraging facts and projections to the overwhelmed parents. Forced to drive to Miami for weekly appointments with specialists, they found some solace through a Facebook parent group, but the journey was a difficult one – especially early on.

“Because there isn’t a lot that is known about her disease, the doctors tried to tell us the worst-case scenario,” recalls Johanna. “I felt like everything was stacked against her.” 

Against All Odds

But Ava, a fourth grader at Keeth Elementary School, has defied those dire projections. Although she wears a prosthetic right eye and has limited vision in her left eye, she has surpassed every one of the doctors’ predictions.

“She is thriving, has friends, has such a funny sense of humor, loves to dance, is so artistic, and has a bubbly, spunky personality. She’s very sassy,” says Johanna. “We feel like she is a walking miracle.” 

Ava is also extremely determined. In addition to her eye condition, she has a disability called a thin corpus callosum, which means Ava has difficulty with bilateral movements such as walking or riding a bike. This past summer, however, Ava decided she wanted to learn how to swim. 

“Sure enough, she put her mind to it,” says Johanna, “and she’s swimming.”

By running in the New York City Marathon on behalf of NORD, Johanna was able to raise awareness and advocate for kids like Ava. The race also gave her an opportunity to show support for other families who are grappling with the life-altering news that their little ones have a rare disease.

In This Together

For the marathon, she joined a NORD team of 19 runners from across the country. They met up in person for the first time the day before the race. Together, they collected more than $100,000, with Johanna raising $5,000 of that through contributions from friends, family, and colleagues. 

Anthony, Ava, and Ava’s big brother Lucas (a sixth grader at Indian Trails Middle School) accompanied Johanna to New York to cheer her on. During the marathon, she used an app that allowed her to listen to voice memos from family members and friends, which served as powerful motivation. 

“At every mile marker, you hear these one-minute voice memos,” says Johanna. “I was able to listen to Ava’s voice cheering me on at certain mile markers, which was very emotional.”

While racing in a marathon is an extreme physical challenge, Johanna says it’s nothing compared to living with a rare condition.

“I felt like running was my way of showing Ava, ‘If you can do hard things, so can Mommy,’” she says. “If you can do these daily things that are a struggle and are hard and you’re overcoming this, then a marathon is passing, right?” 

Be Spotted in Stripes 

According to the National Organization for Rare Disorders, one out of every 10 Americans is living with a rare disease. That adds up to more than 30 million people in the United States alone.

NORD is the official U.S. sponsor for Rare Disease Day, a global initiative to raise awareness and generate change for those on a rare medical journey –  an estimated 300 million people worldwide. 

Rare Disease Day is observed on the last day of February, which in 2026 is                                 February 28. Supporters wear stripes on that day to mimic a zebra, because – like zebras with their unique stripes – those with rare conditions are unique. The Cilenti family will be sporting stripes on that day, and they invite you to join the movement, too.