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Twin sisters lean on each other for support as one battles rare disease

Monica and Natalie Rex
Posted at 6:12 AM, Oct 13, 2023
and last updated 2023-10-13 18:48:42-04

TAMPA, Fla. — Monica and Natalie Rex are more than just twin sisters. They're best friends and now, as adults, even roommates.

“She's the single most influential person in my life, and I wrote about how most of the great characteristics that you see in me are likely a result of our relationship,” said Monica.

“She's so wise. And she's so good about bringing such a balanced perspective to things,” explained Natalie.

But little did they know that seven years ago, their lives would change forever. Natalie was diagnosed with Friedreich’s Ataxia. It's a rare disease that causes progressive damage to the nervous system and creates movement problems.

“How do I get excited about the future anymore when it just now seems like very dark?” asked Natalie. “There was just so much I didn't know, and it was just scary.”

“It was very discouraging. It was devastating. It was terrible. It was absolutely terrible,” explained Monica.

Natalie struggles with depression, and now having a physically debilitating disease, her mental health has become more impacted.

“It manifests itself in a way that it's just like, my emotions are really heightened," said Natalie. "I'm really discouraged about whatever is coming next.”

But now she’s found different ways to heal through that darkness.

“I revert to humor quite frequently as a coping mechanism, and also, just because Friedreich’s Ataxia can be funny," Natalie said. "It is heartbreaking, but if you can figure out how to laugh sometimes, to have that is helpful."

She also sees a therapist who helps her keep everything in perspective.

“I think she helps me really frame the limitations of Friedreich’s Ataxia in a purposeful way,” explained Natalie.

And Monica does what she can to make things physically easier for her twin sister.

“I would prefer to do the grocery shopping if it means I can save more energy for her to hang out with me,” explained Monica.

Faith has also been a huge part of their journey, as both are Christians.

“These truths are of the promises of God, and that he loves us. That he has a plan for us. And he sees us, and he is with us,” said Monica.

“I definitely leverage a lot of worship music. I'm reading my bible. Faith and church and spiritual practices are really big,” said Natalie.

But what really helps these sisters is the bond they share and the support they provide each other.

“She is there, and she is going to listen when things are hard, and she's going to remind me that life is beautiful, and it's good, and we're going to keep going,” said Natalie.

“Reminding Natalie and myself, let's take this day by day. We don't have to solve for how this will look in 10 years and what our lives will look like in 20 years. Let's just do today," Monica said.

The Friedreich’s Ataxia research alliance is holding its next FARA Energy Ball on Saturday, Oct. 15. It starts at 6 p.m. at the Marriott in Channelside.

If you are interested in attending or donating, click here.