By newsfirstusa 
As twins and best friends, Natalie and Monica Rex had spent their complete lives in combination — and have been taking a look ahead to proceeding the ones shared reports into maturity.
However proper sooner than faculty commencement 8 years in the past, the twins — now 30 — have been surprised to find that Natalie has Friedreich’s ataxia (FA), a unprecedented, genetic and typically terrible neurological defect that has effects on most effective 6,000 folk within the U.S.
The sisters joined Fox Information Virtual for an on-camera dialog about how the little-known defect has modified their lives — and additional bolstered their unbreakable bond.
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Natalie was once nearing the top of her senior age in faculty when she began noticing signs — basically problems together with her steadiness.
Natalie and Monica Rex have been surprised to find that Natalie has Friedreich’s ataxia (FA), a unprecedented, genetic and typically terrible neurological defect that has effects on most effective 6,000 folk within the U.S. (Natalie and Monica Rex)
“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 informed Fox Information Virtual.
That was once unusual for Natalie, who grew up enjoying sports activities in an overly athletic population.
“I knew something was off,” she stated.
Next ocular multiple doctors, having her blood drawn and getting examined for diet deficiencies, Natalie in spite of everything noticed 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 prognosis was once a bundle to procedure for Natalie, who was once 3 days from commencement and about to departure for a unutilized activity in Fresh 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 stated.
“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.”
The twins, now 30, have been about to graduate from faculty when Natalie gained her prognosis. (Natalie and Monica Rex)
Monica additionally had a hard generation processing the inside track.
“It felt like our lives were going to be drastically different and also diverge quite a bit,” she informed Fox Information Virtual throughout the similar interview.
“I remember thinking, ‘I can’t imagine what life would be without Natalie.’ It was a brutal time.”
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 outlined as a “genetic, progressive neuromuscular disease,” in step with the Friedreich’s Ataxia Analysis Alliance.
Preliminary signs come with steadiness and coordination problems, which in the end govern to a lack of mobility.
“It felt like our lives were going to be drastically different and also diverge quite a bit,” Monica (left), the dual who does now not have FA, informed Fox Information Virtual. (Natalie and Monica Rex)
Some folk with FA additionally be afflicted by diabetes, scoliosis, fatigue, slurred pronunciation, heart conditions, and visible and listening to impairment, the Alliance states.
As FA is genetic, a prognosis is made through checking out for a mutation within the gene FXN, which is liable for inflicting the defect.
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Maximum folk are identified in childhood between 5 and 15 years of hour, in step with the Alliance, however a couple of quarter of folk enjoy signs as adults, which is referred to as late-onset FA.
The defect is classed as “life-shortening,” with day expectancy in most cases starting 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.”
Time there isn’t but a healing for FA, there are fixes that may backup keep an eye on signs.
Natalie has participated in clinical trials for a drug known as Skyclarys (omaveloxolone), the primary FDA-approved treatment designed to sluggish development of the defect.
Sisterly help
Next Natalie’s prognosis, she and her dual sister moved in in combination in Washington, D.C.
“Monica has taken on the role of being sister, friend, roommate and caregiver,” Natalie stated.
“She wanted to stay close to help us live a very celebratory life while I’m in my more mobile years.”
“I think it’s really drawn us very close, which has been amazing,” Natalie (proper) stated of the twins’ enjoy navigating day with FA. (Natalie and Monica Rex)
In some ways, the sisters revel in day as they all the time have, webhosting dinners and picture nights with pals — however in alternative techniques, Natalie’s defect has ended in two very other reports for the twins.
“I think it’s really drawn us very close, which has been amazing,” Natalie stated.
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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 pleasure in her sister’s choice and tenacity as she navigates FA, together with taking “agency and ownership” of her fitness and collaborating in bodily treatment and personal training.
As Christians, the sisters have drawn reassurance and help from their religion as they navigate the demanding situations of Natalie’s defect. (Natalie and Monica Rex)
“It is an incredibly unfair situation, but she is completely taking it in stride,” Monica stated.
“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 religion
As Christians, the sisters have drawn reassurance and support from their faith as they navigate the demanding situations of Natalie’s defect.
“I lean heavily into my faith to understand and process the purpose and hope that can come from a hopeless diagnosis like FA,” Natalie informed Fox Information Virtual.
“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,” stated Monica. (Natalie Rex)
One in every of Natalie’s favourite Bible verses is two 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 his or her ache.
“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 stated.
Regardless of her day by day struggles, Natalie strives to stick as certain as conceivable, specializing in “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 stated.
“We’re going to have really hard moments, but we’re doing our best to make good things come from something hard.”