If twins and best friendsNatalie and Monica Rex had spent their entire lives together – and looked forward to continuing those shared experiences into adulthood.
But just before graduating eight years ago, the twins – now 30 – were shocked to discover that Natalie had Friedreich’s ataxia (FA), a rare, genetic and usually fatal neurological disease that affects only 6,000 people in the US
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.
Family sells dream home to fund life-saving treatment for five-year-old daughter
Natalie was nearing the end of her senior year of college when she started noticing symptoms – mainly problems with her balance.
Natalie and Monica Rex 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 US. (Natalie and Monica Rex)
“I did a 5K with my roommates in college, and I just felt super awkward and clumsy — I would run like 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 wrong,” she said.
After seeing several doctorsAfter her blood was drawn and she was tested for vitamin deficiencies, Natalie finally saw a neurologist.
“He had seen FA before, which was such a gift, because normally the road to diagnosis – especially for a rare disease – is much longer, and mine was a very short time frame,” she added.
The diagnosis was a daunting task for Natalie, who was three days away from graduation and about to leave for a new job in New York.
“I remember thinking, ‘I can’t imagine what life would be like without Natalie.'”
“I was trying to figure out how to get excited about life when I saw everything crumbling,” she said.
“I was one emotional wreck — my entire family had never heard of FA, and we had no idea what to expect or how it would affect business.”
The twins, now 30, were about to graduate from college when Natalie received her diagnosis. (Natalie and Monica Rex)
Monica also had trouble processing the news.
“It felt like our lives were going to be drastically different and quite divergent,” she 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 tough time.”
MOTHER INSANE TO SAVE CLINICAL TRIAL THAT COULD CURE HER DAUGHTER: ‘THE TREATMENT IS IN A FRIDGE’
Monica has not yet been tested for FA, which she said was a “deliberate decision.”
“There were times in the beginning where I would stumble over something and wonder if I should get tested,” she said. “But after seeing Natalie’s progression, I don’t think I have FA.”
“If I have it, we will find out when we need to, but there is no need to rush that.”
What you need to know about FA
Friedreich’s ataxia (FA) is defined as a “genetic, progressive neuromuscular disease,” according to Friedreich’s Ataxia Research Alliance.
The first symptoms include balance and coordination problemswhich ultimately leads to a loss of mobility.
“It felt like our lives would be drastically different and quite divergent,” Monica (left), the twin who does not have an FA, told Fox News Digital. (Natalie and Monica Rex)
Some people with FA also suffer from diabetes, scoliosis, fatigue, slurred speech, heart diseaseand visual impairment and hearing loss, the Alliance states.
Because FA is genetic, diagnosis is made by testing for a mutation in the FXN gene, which is responsible for causing the disease.
PATIENTS WITH STRIPPERSON SYNDROME SHARE WHAT IT’S LIKE TO LIVE WITH THE RARE DISEASE
Most people are diagnosed with it in childhood between the ages of 5 and 15, according to the Alliance, but about a quarter of people experience symptoms as adults, known as FA later in life.
The disease is classified as ‘life-shortening’, with life expectancy typically ranging from 37 to 50 years.
“It’s cruel to watch the person you love most go through something they have no control over.”
Although there is no cure yet for FA, there are medications that can help manage the symptoms.
Natalie took part in this 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 taken on the role of sister, friend, roommate and caregiver,” Natalie said.
“She wanted to stay close to help us live a very festive life while I am in my more mobile years.”
“I think it brought us really close, which was great,” Natalie (right) said of the twins’ experience navigating life with FA. (Natalie and Monica Rex)
In many ways, the sisters are enjoying life as they always have, hosting dinner parties and movie nights with friends, but in other ways Natalie’s illness has resulted in two very different experiences for the twins.
“I think it brought us really close, which was great,” Natalie said.
CLICK HERE TO DOWNLOAD THE FOX NEWS APP
“But it has also created many moments where we need to understand that our boundaries and limitations are different, and that we need to work together to give each other the freedom to do things differently.”
Monica expressed pride in her sister’s determination and tenacity as she navigated FA, including taking “agency and ownership” over her health and participating in physical therapy and personal training.
As Christians, the sisters have drawn comfort and support from their faith as they faced the challenges of Natalie’s illness. (Natalie and Monica Rex)
“It’s an incredibly unfair situation, but she’s completely okay with it,” Monica said.
“It’s brutal to watch the person you love most in the world go through something they have no control over and that impacts every day and every moment – but we just tried to take it day by day together .”
CLICK HERE TO SIGN UP FOR OUR HEALTH NEWSLETTER
The sisters see them friendship and relationship as a “unique gift,” Monica added.
“There have been moments of tension as we figure out what it looks like to get through this together — but we will always be there for each other and we will always have each other’s back,” she added.
“At the end of the day, we just want the best for each other.”
Leaning on faith
As Christians, the sisters have found comfort support from their faith as they deal with the challenges of Natalie’s illness.
“I’m leaning heavily on my faith to understand and process the purpose and I hope this can come from a hopeless diagnosis like FA,” Natalie told Fox News Digital.
“The physical deterioration 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 become whole and healthy in eternity,” Monica said. (Natalie Rex)
One of Natalie’s favorites Bible verses is 2 Corinthians 4:16, which says, “Therefore we do not lose heart. Though outwardly we fade away, yet inwardly we are renewed day by day.”
Monica added that she trusts God has a “bigger plan” for their pain.
“We’re going to have some really tough moments, but we’re doing our best to make good things come out of something tough.”
“The physical deterioration 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 changed. whole and healthy in eternity,” she said.
Despite her daily struggles, Natalie strives to remain as positive as possible and focus on “breaking the myth that joy can only be found in a pain-free life.”
For more health articles, visit www.foxnews.com/health
“Life won’t be perfect, but we can still make it really good,” she said.
“We’re going to have some really tough moments, but we’re doing our best to make good things come out of something tough.”
