Rare disease diagnosis strengthens bond between twin sisters: ‘Doing our best’

As twins and best friends, Natalie and Monica Rex had spent their entire lives together — and were looking forward to continuing those shared experiences into adulthood.

But right before college graduation eight years ago, the twins — now 30 — were shocked to discover that Natalie has Friedreich’s ataxia (FA), a rare, genetic and usually fatal neurological disease that affects only 6,000 people in the U.S.

The sisters joined Fox News Digital for an on-camera conversation about how the little-known disease has changed their lives — and further strengthened their unbreakable bond.

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Natalie was nearing the end of her senior year in college when she started noticing symptoms — primarily issues with her balance.

“I was doing a 5K with my college roommates, and I was just feeling super awkward and clumsy — I would hit about three miles and feel really tired,” she told Fox News Digital.

That was abnormal for Natalie, who grew up playing sports in a very athletic family.

“I knew something was off,” she said.

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After seeing multiple doctors, having her blood drawn and getting tested for vitamin deficiencies, Natalie finally saw a neurologist.

“He had seen FA before, which was such a gift, because normally the path to diagnosis — particularly for a rare disease — is much longer, and mine was a very short time frame,” she added.

The diagnosis was a lot to process for Natalie, who was three days from graduation and about to depart for a new job in New York.

“I remember thinking, ‘I can’t imagine what life would be without Natalie.’”

“I was trying to figure out how to get excited about life when I was experiencing everything crumbling,” she said.

“I was an emotional wreck — my whole family had never heard of FA, and we had no idea what to expect and how it would impact things.”

Monica also had a difficult time processing the news.

“It felt like our lives were going to be drastically different and also diverge quite a bit,” she told Fox News Digital during the same interview.

“I remember thinking, ‘I can’t imagine what life would be without Natalie.’ It was a brutal time.”

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Monica has not yet gotten tested for FA, which she said was an “intentional decision.”

“In the beginning, there would be moments where I would trip on something and would wonder if I should get tested,” she said. “But after seeing some of Natalie’s progression, I don’t think that I have FA.”

“If I do have it, we’ll find out when we need to — but there’s no need to expedite that.”

What to know about FA

Friedreich’s ataxia (FA) is defined as a “genetic, progressive neuromuscular disease,” according to the Friedreich’s Ataxia Research Alliance.

Initial symptoms include balance and coordination problems, which ultimately lead to a loss of mobility.

Some people with FA also suffer from diabetes, scoliosis, fatigue, slurred speech, heart conditions, and vision and hearing impairment, the Alliance states.

As FA is genetic, a diagnosis is made by testing for a mutation in the gene FXN, which is responsible for causing the disease.

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Most people are diagnosed in childhood between 5 and 15 years of age, according to the Alliance, but about a quarter of people experience symptoms as adults, which is known as late-onset FA.

The disease is classified as “life-shortening,” with life expectancy typically ranging from 37 to 50 years.

“It’s brutal to watch the person you love most in the world go through something they can’t control.”

While there is not yet a cure for FA, there are medications that can help control symptoms.

Natalie has participated in clinical trials for a drug called Skyclarys (omaveloxolone), the first FDA-approved therapy designed to slow progression of the disease.

Sisterly support

After Natalie’s diagnosis, she and her twin sister moved in together in Washington, D.C.

“Monica has taken on the role of being sister, friend, roommate and caregiver,” Natalie said. 

“She wanted to stay close to help us live a very celebratory life while I’m in my more mobile years.”

In many ways, the sisters enjoy life as they always have, hosting dinners and movie nights with friends — but in other ways, Natalie’s disease has resulted in two very different experiences for the twins.

“I think it’s really drawn us very close, which has been amazing,” Natalie said. 

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“But it’s also created a lot of moments where we have to understand that our limits and our constraints are different, and we have to work together to give each other the freedom to do things differently.”

Monica expressed her pride in her sister’s determination and tenacity as she navigates FA, including taking “agency and ownership” of her health and participating in physical therapy and personal training.

“It is an incredibly unfair situation, but she is completely taking it in stride,” Monica said. 

“It’s brutal to watch the person you love most in the world go through something they can’t control that impacts every day and every moment — but we’ve just tried to take it day by day together.”

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The sisters see their friendship and relationship as a “unique gift,” Monica added.

“There have been moments of tension as we figure out what it looks like to navigate this together — but we will always be there for each other, and we’ll always have each other’s backs,” she added.

“At the end of the day, we truly just want what’s best for each other.”

Leaning on faith

As Christians, the sisters have drawn comfort and support from their faith as they navigate the challenges of Natalie’s disease.

“I lean heavily into my faith to understand and process the purpose and hope that can come from a hopeless diagnosis like FA,” Natalie told Fox News Digital.

One of Natalie’s favorite Bible verses is 2 Corinthians 4:16, which says, “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.”

Monica added that she trusts God has a “bigger plan” for their pain. 

“We’re going to have really hard moments, but we’re doing our best to make good things come from something hard.”

“The physical decline of Natalie’s body is a daily reminder that this world is not our home — and that one day, all things, including our bodies, will be made whole and healthy in eternity,” she said.

Despite her day-to-day struggles, Natalie strives to stay as positive as possible, focusing on “disrupting the myth that that joy can only be found in a pain-free life.”

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“Life is not going to be perfect, but we can still make it really good,” she said. 

“We’re going to have really hard moments, but we’re doing our best to make good things come from something hard.”