As twins and best friends, Natalie and Monica Rex spent their entire lives together and looked forward to continuing that shared experience into adulthood.
But just before graduating from college eight years ago, the twins, now 30, were shocked to learn that Natalie had Friedreich's ataxia (FA). FA is a rare, genetic, and usually fatal neurological disease that affects only 6,000 people in the United States.
The sisters appeared on Fox News Digital and spoke on camera about how this little-known disease has changed their lives, further strengthening their inseparable bond.
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Natalie was nearing the end of her senior year of college when she started noticing symptoms, primarily balance issues.
Natalie and Monica Rex are shocked to learn that Natalie has Friedreich's Ataxia (FA). FA is a rare, genetic, and usually fatal neurological disease that affects only 6,000 people in the United States. (Natalie and Monica Rex)
“I was running a 5K with my college roommates, and it was very awkward and awkward. After about three miles, I was so tired,” she told FOX News Digital.
It was unusual for Natalie, who grew up playing sports in a very athletic family.
“I knew something was wrong,” she said.
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After seeing multiple doctors, having her blood drawn and being tested for vitamin deficiencies, Natalie finally saw a neurologist.
“He had been to FA before, which was such a gift, because usually, especially with rare diseases, the path to diagnosis is much longer, but in my case it was very short. Period,” she added.
The diagnosis was difficult for Natalie to process, as she was just three days away from graduation and about to leave for a new job in New York.
“I remember thinking, 'I can't imagine life without Natalie.'”
“I was trying to find a way to get excited about life when everything was falling apart,” she said.
“I was devastated. My whole family had never heard of free agency and had no idea what was going to happen or how it would affect things.”
The twins, now 30 years old, were about to graduate from college when Natalie was diagnosed. (Natalie and Monica Rex)
Monica also had a hard time processing the news.
“It felt like our lives changed dramatically and diverged quite a bit,” she told FOX News Digital in the same interview.
“I remember thinking, 'I can't imagine life without Natalie.' It was a cruel time.”
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Monica has not yet taken the FA test, which she said was a “deliberate decision”.
“In the beginning, there were moments where I stumbled over something and wondered if I should get tested,” she says. “But after seeing some of Natalie's growth, I don't think she'll have free agency.”
“If I have it, I'll know when I need it. But there's no need to rush it.”
What you need to know about FA
Friedreich's ataxia (FA) is defined as an “inherited progressive neuromuscular disease” according to the Friedreich's Ataxia Research Alliance.
Early symptoms include problems with balance and coordination, eventually leading to loss of mobility.
“It felt like our lives had changed dramatically and diverged quite a bit,” Monica (left), a twin without FA, told FOX News Digital. (Natalie and Monica Rex)
Some FA patients have diabetes, scoliosis, fatigue, slurred speech, heart disease, and vision and hearing problems, the alliance says.
Because FA is hereditary, diagnosis is made by testing for mutations in the gene FXN that causes the disease.
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The organization says most people are diagnosed in childhood, between the ages of 5 and 15, but about a quarter of people don't experience symptoms until adulthood, known as late-onset FA. It will be done.
The disease is classified as a “life-shortening disease” and life expectancy typically ranges from 37 to 50 years.
“It's cruel to watch the person you love most in the world go through something you have no control over.”
There is still no cure for FA, but there are medications that can help control symptoms.
Natalie participated in a clinical trial for a drug called Skyclaris (omaveloxolone), the first FDA-approved treatment aimed at slowing the 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 sister, friend, roommate and caregiver,” Natalie said.
“She wanted me to be close so we could have a really fun life while I was in a more mobile phase.”
“I think it's really brought us very close, which is great,” Natalie (right) said of the twins' journey through life in the FA. (Natalie and Monica Rex)
In many ways, the sisters are enjoying life as usual, hosting dinners and movie nights with friends, but in other ways, Natalie's illness has created two very different experiences for the twins. brought.
“I think it really brought us very close, which was amazing,” Natalie said.
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“But it also created a lot of moments where we had to understand that our limits and constraints are different, and we have to work together to give each other the freedom to do things differently.”
Monica expressed that she is proud of her sister's determination and tenacity in overcoming FA, including taking “independence and responsibility” in managing her own health and participating in physical therapy and personal training.
As Christians, the sisters have drawn comfort and support from their faith as they navigate the challenges of Natalie's illness. (Natalie and Monica Rex)
Monica said: “It's an incredibly unfair situation, but she's completely accepted it.”
“It's cruel to watch the person you love most in the world go through events beyond your control that affect them every day and every moment, but we just try to get through each day together. I did.”
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Monica added that the sisters consider their friendship and relationship to be a “unique gift.”
“There have been some tense moments as we consider what it will be like to get through this together, but we will always be there for each other and always have each other's backs,” she said. added.
“At the end of the day, we really want what's best for each other.”
rely on faith
As Christians, the sisters have drawn comfort and support from their faith as they navigate the challenges of Natalie's illness.
“I lean heavily into my faith to help me understand and process the purpose and hope that comes from a devastating diagnosis like FA,” Natalie told FOX News Digital.
“Natalie's physical decline is a daily reminder that this world is not our home and that one day everything, including our bodies, will be whole and healthy forever,” Monica said. spoke. (Natalie Rex)
One of Natalie's favorite Bible verses is 2 Corinthians 4:16, “Therefore we do not faint, for although outwardly we are failing, inwardly we are being renewed every day.” ” is written.
Monica added that she believes God has a “bigger plan” for their pain.
“We're going to have some really difficult moments, but we're doing our best to make something good out of the difficulties.”
“Natalie's physical decline is a daily reminder that this world is not our home, and that one day everything, including our bodies, will be forever whole and healthy,” she said. Ta.
Despite her daily struggles, Natalie tries to stay as positive as possible, focusing on “shattering the myth that joy can only be found in a pain-free life.”
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“Life will never be perfect, but you can still make it really good,” she said.
“We're going to have some really difficult moments, but we're doing our best to make something good out of the difficulties.”
