Grace Nuhfer Hopes a Homecoming in Indianapolis Will Spur Her to Her First Paralympic Games

When Grace Nuhfer returned to the IU Natatorium in Indianapolis last month for the Para Swimming World Series, emotions flowed.

She responded by leading a Team USA podium sweep in the women’s 100-meter butterfly.

Nuhfer, 21, attended high school a short drive away in Greenwood, Indiana. “The Nat” is where she swam in club meets and state high school championships. Now, as she embarks on a summer that she hopes will lead her to Paris for the Paralympic Games, friends and family were able to return to the familiar pool to cheer her on.

“It’ll be super fun to have a cheering section,” Tami Nuhfer, Grace’s mom, said, before the meet. “It’ll also be a fun feeling to see it live, watch her on a screen and have the announcer say her name. Her sister Elaina and I volunteered on (Thursday), so I get to be on deck for timing and meet all her friends.”

This also is where Grace’s swimming career began in earnest after breaking out of what she called “the cage of fear.”

Both Grace and Elaina have Ehlers-Danlos syndrome, a group of genetic connective tissue disorders that affect the skin, joints and blood vessels and manifest differently in different people. With both having a rare expression of EDS called Brittle Cornea Syndrome that is only known to affect fewer than two dozen people worldwide, the sisters grew up in constant fear of their corneas rupturing.

“My mom and I and family reflect on it,” said Grace, who can make out shapes and colors but is extremely near-sighted. “Everything was a risk. Everything had to be calculated. We stayed in swimming because it was a safety sport. We wore goggles so our eyes were protected at all costs.”

Grace has overcome these challenges to swim at the University of Akron. Last November, she represented her country at the 2023 Parapan American Games in Santiago, Chile. While securing the silver medal in the 50-meter freestyle S13, Grace also shattered a Parapan Am Games record. This year, she hopes to represent the U.S. at the Paralympic Games Paris 2024.

It’s been a long journey to get to this point.

Tami Nuhfer said meeting with genetic specialists began when Grace was 18 months. When Elaina was born a couple of years later, she displayed many of the same symptoms.

The message for both girls echoed clearly: Protect the eyes at all costs. No bats, balls or rackets. Their parents met with elementary school teachers. Colored curbs were done for them.

Grace remembers going with her grandmother to see Dr. Adam Kaufman, a Cincinnati specialist the family thinks of highly. But he also was extremely cautious.

“He had done some research, and he was worried about me diving into water and so he tried to convince my parents to take us out of swimming,” Grace said. “I was shocked to learn that. Imagine if we did?

“So we do everything to protect my sister’s and my corneas — and hers still ruptures for no apparent reason.”

Elaina, 7, told her mom that her eye itched and burned.

“I saw what looked like blisters on her eye,” Tami recalled.

Two months after emergency surgery, Elaina told her mom her other eye “wants to be like that eye.”

“It was like God said, ‘Now you really understand you have no control,” Tami said.

While it took 50 sutures in each eyeball and three years of recovery, Elaina has learned to manage the condition and now works with children with special needs.

“And she can see quite a bit better,” Grace said. “She can legally drive. I can’t.”

A year after Elaina’s procedures, Tami spoke to the LifeCenter Organ Donor Network. Part of her speech was “overcoming the prison of fear and worry.”

Grace tackled her challenge head on. She competed whenever she could. Despite having limited vision, she followed a simple rule — “follow the black line at the bottom of the pool.”

She took part in swim meets at “The Nat” about five times a year. In the meantime, her parents took her to NCAA meets and other major events at the Indianapolis pool.

“When I saw the banners hanging up, I said, ‘I’ll be in the Olympics,’” Grace said. “This will be something I want to keep doing. When you’re older, there’s a realization that, ‘This kind of sucks sometimes.’ But the younger me made the most of it.”

After earning a win in the 100 butterfly and a second-place finishes in the 200 IM and 50 freestyle at the U.S. Paralympics Swimming National Championship in December, Grace returned to Akron to complete her collegiate season, which wrapped up at the Mid-American Championships in early March.

To qualify for Paris, Grace said time or place isn’t as important as being ranked well.

Whatever is needed, don’t count her out.

“(Grace is) someone who if you told her she can’t do something, she’s going to prove you wrong and do it,” Akron swimming and diving coach Brian Peresie said in a video produced by the school.

Tami Nuhfer added, “I knew in my heart, God has big plans for our daughters. I just didn’t know what.”

Craig Handel is a freelance contributor to USParaSwimming.org on behalf of Red Line Editorial, Inc.