As twins and finest pals, Natalie and Monica Rex had spent their whole lives collectively — and have been wanting ahead to persevering with these shared experiences into maturity.
However proper earlier than school commencement eight years in the past, the twins — now 30 — have been shocked to find that Natalie has Friedreich’s ataxia (FA), a uncommon, genetic and often deadly neurological illness that impacts solely 6,000 individuals within the U.S.
The sisters joined Fox Information Digital for an on-camera interview about how the little-known illness has modified their lives — and additional strengthened their unbreakable bond. (See the video on the prime of this text.)
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Natalie was nearing the top of her senior yr in school when she began noticing signs — primarily points along with her stability.
“I used to be doing a 5K with my school roommates, and I used to be simply feeling tremendous awkward and clumsy — I might hit about three miles and really feel actually drained,” she instructed Fox Information Digital.
Natalie and Monica Rex have been shocked to find that Natalie has Friedreich’s ataxia (FA), a uncommon, genetic and often deadly neurological illness that impacts solely 6,000 individuals within the U.S. (Natalie and Monica Rex)
That was irregular for Natalie, who grew up taking part in sports activities in a really athletic household.
“I knew one thing was off,” she stated.
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After seeing a number of medical doctors, having her blood drawn and getting examined for vitamin deficiencies, Natalie lastly noticed a neurologist.
“He had seen FA earlier than, which was such a present, as a result of usually the trail to analysis — significantly for a uncommon illness — is for much longer, and mine was a really quick time-frame,” she added.
The analysis was loads to course of for Natalie, who was three days from commencement and about to depart for a brand new job in New York.
“I keep in mind pondering, ‘I can not think about what life could be with out Natalie.’”
“I used to be attempting to determine how one can get enthusiastic about life after I was experiencing every thing crumbling,” she stated.
“I used to be an emotional wreck — my entire household had by no means heard of FA, and we had no thought what to anticipate and the way it could impression issues.”
The twins, now age 30, have been about to graduate from school when Natalie acquired her analysis. (Natalie and Monica Rex)
Monica additionally had a tough time processing the information.
“It felt like our lives have been going to be drastically completely different and likewise diverge fairly a bit,” she instructed Fox Information Digital throughout the identical interview.
“I keep in mind pondering, ‘I can not think about what life could be with out Natalie.’ It was a brutal time.”
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Monica has not but gotten examined for FA, which she stated was an “intentional choice.”
“To start with, there could be moments the place I might journey on one thing and would surprise if I ought to get examined,” she stated. “However after seeing a few of Natalie’s development, I do not suppose that I’ve FA.”
She added, “If I do have it, we’ll discover out when we have to — however there is no have to expedite that.”
What to learn about FA
Friedreich’s ataxia (FA) is outlined as a “genetic, progressive neuromuscular illness,” in line with the Friedreich’s Ataxia Analysis Alliance.
Preliminary signs embrace stability and coordination issues, which in the end result in a lack of mobility.
“It felt like our lives have been going to be drastically completely different and likewise diverge fairly a bit,” Monica (left), the dual who doesn’t have FA, instructed Fox Information Digital. (Natalie and Monica Rex)
Some individuals with FA additionally endure from diabetes, scoliosis, fatigue, slurred speech, coronary heart situations, and imaginative and prescient and listening to impairment, the Alliance states.
As FA is genetic, a analysis is made by testing for a mutation within the gene FXN, which is answerable for inflicting the illness.
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Most individuals are recognized in childhood between 5 and 15 years of age, in line with the Alliance, however a couple of quarter of individuals expertise signs as adults, which is named late-onset FA.
The illness is assessed as “life-shortening,” with life expectancy sometimes starting from 37 to 50 years.
“It’s brutal to look at the individual you like most on the planet undergo one thing they can not management.”
Whereas there may be not but a remedy for FA, there are medicines that may assist management signs.
Natalie has participated in scientific trials for a drug known as Skyclarys (omaveloxolone), the primary FDA-approved remedy designed to sluggish development of the illness.
Sisterly help
After Natalie’s analysis, she and her twin sister moved in collectively in Washington, D.C.
“Monica has taken on the position of being sister, pal, roommate and caregiver,” Natalie stated.
“She needed to remain shut to assist us reside a really celebratory life whereas I am in my extra cellular years.”
“I believe it is actually drawn us very shut, which has been wonderful,” Natalie (proper) stated of the twins’ expertise of navigating life with FA. (Natalie and Monica Rex)
In some ways, the sisters get pleasure from life as they at all times have, internet hosting dinners and film nights with pals — however in different methods, Natalie’s illness has resulted in two very completely different experiences for the twins.
“I believe it is actually drawn us very shut, which has been wonderful,” Natalie stated.
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“But it surely’s additionally created quite a lot of moments the place we’ve got to know that our limits and our constraints are completely different, and we’ve got to work collectively to provide one another the liberty to do issues in a different way.”
Monica expressed her delight in her sister’s willpower and tenacity as she navigates FA, together with taking “company and possession” of her well being and collaborating in bodily remedy and private coaching.
As Christians, the sisters have drawn consolation and help from their religion as they navigate the challenges of Natalie’s illness. (Natalie and Monica Rex)
“It’s an extremely unfair state of affairs, however she is totally taking it in stride,” Monica stated.
“It’s brutal to look at the individual you like most on the planet undergo one thing they can not management that impacts on daily basis and each second — however we have simply tried to take it daily collectively.”
The sisters see their friendship and relationship as a “distinctive present,” Monica added.
“There have been moments of stress as we work out what it appears to be like prefer to navigate this collectively — however we’ll at all times be there for one another, and we’ll at all times have one another’s backs,” she added.
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“On the finish of the day, we really simply need what’s finest for one another.”
Leaning on religion
As Christians, the sisters have drawn consolation and help from their religion as they navigate the challenges of Natalie’s illness.
“I lean closely into my religion to know and course of the aim and hope that may come from a hopeless analysis like FA,” Natalie instructed Fox Information Digital.
“The bodily decline of Natalie’s physique is a every day reminder that this world just isn’t our dwelling — and that at some point, all issues, together with our our bodies, will probably be made entire and wholesome in eternity,” stated Monica. (Natalie Rex)
Certainly one of Natalie’s favourite Bible verses is 2 Corinthians 4:16, which says, “Due to this fact we don’t lose coronary heart. Although outwardly we’re losing away, but inwardly we’re being renewed daily.”
Monica added that she trusts God has a “greater plan” for his or her ache.
“We will have actually arduous moments, however we’re doing our greatest to make good issues come from one thing arduous.”
“The bodily decline of Natalie’s physique is a every day reminder that this world just isn’t our dwelling — and that at some point, all issues, together with our our bodies, will probably be made entire and wholesome in eternity,” she stated.
Regardless of her day-to-day struggles, Natalie strives to remain as constructive as doable, specializing in “disrupting the parable that that pleasure can solely be present in a pain-free life.”
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“Life just isn’t going to be excellent, however we are able to nonetheless make it actually good,” she stated.
“We will have actually arduous moments, however we’re doing our greatest to make good issues come from one thing arduous.”
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