As Twins and best friendsNatalie and Monica Rex had spent their entire lives together – and looked forward to continuing these shared experiences into adulthood.
But before graduating from college eight years ago, the twins — now 30 — were shocked to learn that Natalie Friedrich’s catalog (FA), a rare, genetic and usually fatal neurological disease that affects only about 6,000 people in the United States.
The sisters joined Fox News Digital for an on-camera conversation about how the little-known disease has changed their lives — and strengthened their unbreakable bond.
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Natalie was nearing the end of her senior year in college when she started noticing symptoms — mainly problems with her balance.
Natalie and Monica Rex were shocked to learn that Natalie has Friedreich’s Ataxia (FA), a rare, genetic, and usually fatal neurological disease that affects only about 6,000 people in the United States. (Natalie and Monica Rex)
“I was doing a 5K with my college roommate, and I just felt so weird and clumsy — I’d go about three miles and feel Really tired” he told Fox News Digital.
This was unusual for Natalie, who grew up playing sports in a very athletic family.
“I knew something was off,” she said.
After watching Several doctorsAfter having her blood drawn and tested for vitamin deficiencies, Natalie finally saw a neurologist.
“He had seen FA before, which was such a gift, because usually the path to diagnosis — especially for a rare disease — is so long, and my time was so short,” he added. ”
For Natalie, who was three days from graduation and about to leave for a new job in New York, the diagnosis was crucial.
“I remember thinking, ‘I can’t imagine what life would be like without Natalie.’
“I was trying to figure out how to be excited about life when I was experiencing everything falling apart,” she said.
“I was one. An emotional wreck – My whole family had never heard of FA, and we had no idea what to expect and how it would affect things.”
The twins, now 30, were about to graduate from college when Natalie was diagnosed. (Natalie and Monica Rex)
Monica also had a hard time processing the news.
“It feels like our lives are going to be completely different and drastically different,” he told Fox News Digital during the same interview.
“I remember thinking, ‘I can’t imagine what life would be like without Natalie.’ It was a cruel time.”
Monica has yet to test for the FA, which she said was a “deliberate decision”.
“In the beginning, there will be moments when I’ll trip over something and wonder if I should get tested,” he said. “But after seeing some of Natalie’s progress, I don’t think I have FA.”
“If I have it, we’ll know when we need it – but there’s no need to rush it.”
What to know about FA
Friedreich’s Ataxia (FA) is defined as a “genetic, progressive neurological disease” according to the Friedreich’s Ataxia Research Alliance.
Balance in early signs and Coordination issueswhich ultimately leads to loss of mobility.
“It felt like our lives were going to be completely different and drastically different,” Monica (left), the non-FA twin, told Fox News Digital. (Natalie and Monica Rex)
Some people with FA have diabetes, scoliosis, fatigue, slurred speech, Heart conditionsand vision and hearing impairments, the Alliance says.
As FA is genetic, it is diagnosed by testing for mutations in the gene FXN, which causes the disease.
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Most people are diagnosed. In childhood Between the ages of 5 and 15, but about a quarter of people experience symptoms as adults, called late-onset FA, according to the Alliance.
The disease is classified as “life-shortening,” with life expectancy typically ranging from 37 to 50 years.
“Watching the person you love most in the world go through something they can’t control is brutal.”
Although there is currently no cure for FA, there are medications that can help control symptoms.
Natalie attended. Clinical trials for a drug called Skyclarys (omaveloxolone), the first FDA-approved therapy designed to slow the progression of the disease;
Sisterly support
After Natalie’s diagnosis, she and her twin sister moved in together. Washington DC
“Monica has played the role of sister, friend, roommate and caregiver,” Natalie said.
“She wanted to be around to help us live a very celebratory life when I’m in my more mobile years.”
“I think it’s really brought us closer together, which has been amazing,” Natalie (right) said of her experience navigating the twins’ lives with FA. (Natalie and Monica Rex)
In many ways, the sisters enjoy life as usual, hosting dinners and movie nights with friends—but in other ways, Natalie’s illness has resulted in two very different experiences for the twins. are
“I think it’s really brought us closer together, which has been amazing,” Natalie said.
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“But it’s also created a lot of moments where we have to realize that our boundaries and our constraints are different, and we have to work together to give each other the freedom to do things differently.”
Monica is proud of her sister’s commitment and perseverance as she navigates FA, including taking “agency and ownership” of her health and participating in physical therapy and Personal training.
As Christians, the sisters have found comfort and support in their faith as they face the challenges of Natalie’s illness. (Natalie and Monica Rex)
“It’s an incredibly unfair situation, but she’s totally taking it,” Monica said.
“It’s brutal to watch the person you love most in the world go through something they can’t control that affects them every day and every moment – but we take it day by day. Tried to go.”
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Sisters look at them Friendship and relationship As a “unique gift,” Monica added.
“There have been tense moments as we figure out what it’s like to navigate this together — but we’ll always be there for each other, and we’ll always have each other’s backs,” he added.
“At the end of the day, we really just want what’s best for each other.”
Lean on faith
As Christians, the sisters have found peace and Supporting their faith As they navigate the challenges of Natalie’s illness.
“I lean heavily on my faith to understand and act on the purpose and hope that can be gained from a hopeless diagnosis like FA,” Natalie told Fox News Digital.
“The physical decay 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 whole and whole forever,” said Monica. said (Natalie Rex)
One of Natalie’s favorites Bible verses There is 2 Corinthians 4:16, which says, “Therefore we do not lose heart. Although outwardly we are perishing, inwardly we are being made new day by day.”
Monica added that she believes God has a “big plan” for her pain.
“We’re going to have really tough times, but we’re doing our best to make sure the good things come hard.”
“The physical decay 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. Full and healthy In eternity,” he said.
Despite her daily struggles, Natalie tries to stay as positive as possible, focusing on “dispelling the myth that happiness can only be found in a pain-free life.”
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“Life won’t be perfect, but we can still make it really good,” he said.
“We’re going to have really tough times, but we’re doing our best to make sure the good things come hard.”