Home / All / #WeAreMore: Chloe R. Talks About Life with PCD, Modeling and Sneaker Style

#WeAreMore: Chloe R. Talks About Life with PCD, Modeling and Sneaker Style

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Written by Jazerai Allen-Lord

art by: @gleninfante

It’s 4 pm on the Fourth of July and Chloe R is in full distress. Everyone at the BBQ freezes as Chloe struggles to breathe and Leslie, Chloe’s mom, immediately bursts into action.

In less than ninety seconds Chloe is stabilized next to the air conditioner with a blanket and her iPhone, strapped to the portable nebulizer that has saved her life over three hundred times across the ten short years of her life.

She giggles and the anxiety slowly evaporates from the room as the crowd starts shuffling around.  It’s as if someone has pushed pause on the tape of her life, but it’s Groundhog Day and these days, Chloe R. knows exactly how to change the loop.

Aside from the emergency nebulizer, there is the airway clearance vest (used three times a day to clear the excess mucus from her respiratory system), four preventative medications to combat bacterial infections from forming in her lungs and her nifty inhaler – which tucks neatly inside of her custom, laser-etched handbag.

Chloe was diagnosed with Primary Ciliary (SIL-e-ar-e) Dyskinesia (dis-kih-NE-ze-ah) aka PCD at six years old but has been suffering from the rare disease since birth.  Often confused with cystic fibrosis, PCD specifically affects the cilia – the tiny, hair-like structures that line the airways.  If the cilia aren’t doing their job, bacteria stays in your airways, resulting in breathing problems, infections and a host of other health issues that an estimated 25,000 Americans deal with every day. Stay woke.

Considering the unpredictable weather and germs that come with living in New York City, Chloe R. is homeschooled and excluded from sports activities that traditionally fill a ten-year old’s schedule. Instead, Chloe’s calendar is filled with doctors appointments and hospital visits, where she is not only a patient but a motivational speaker and advocate for PCD Awareness.

It was through a ten-month stay at Hackensack University Medical Center that Chloe R. found her voice, releasing PCD Has Nothing on Me in 2015 through LifeRich Publishing as her wish with the Make-a- Wish Foundation.  Through that experience and her subsequent features with Macy’s National Believe Day, Nickelodeon and The Wall St. Journal, Chloe R. was introduced to the only thing she loves more than creating awareness — modeling.

“I am very, very, VERY passionate about modeling.  Not because of the cameras, but because I feel like when I’m modeling, I’m just a simple kid….who happens to be modeling. I’m technically acting, but I’m getting to do things that “normal” kids do.  In that moment, I don’t have PCD.  I’m just a regular kid.”

We’re five minutes into the interview and one thing is abundantly evident – Chloe R. is more than her PCD.

Chloe R. and I became kindred spirits earlier this Summer through our mutual love of yoga and high-tops. I recently met up with her for a Back to School shopping trip and quick photo shoot before she hopped on a plane to Cali. This little Dominican Diva is busy.

Jazerai: When you fall, you fall hard.  Most of us stumble, but you seem to pick yourself up pretty quickly and rock on. Walk me through that moment in your brain where you feel like, ‘Oh man, things are about to go very left.”

Chloe R.: I’m going be totally honest, it’s fear. I mean, I already know that I’m not going to die, I’ve been through this a long time. I know what to do – but I’m still scared, every single time that it happens.

Jazerai: What do you do to push through that fear?

Chloe R.: I tap into something more. For me, that’s God. Faith. Faith is the only thing that gets me through this. God telling me, ‘It’s going to be fine. Because YOU’RE going to be fine. Everything is fine…”

Her voice drifts off, falling into a whisper filled with a solemn calm normally developed far beyond her years.  She pauses.

“You know what Titi Jaz, everyone says they’re okay.”

Jazerai: Maybe they are?

Chloe: They say they’re okay, but they’re really not okay – and they WOULDN’T be okay.  The truth is that most kids wouldn’t know what to do if they had this.  Take all of my friends, for instance.  Even the home schooled ones have at least one sport that they’re doing, like, all the time.  Me? I sit on the sidelines.

Now, imagine if someone told them today, “You can’t do that.” “You can’t run across the field.” “You can’t go on the trampoline.”

What if all of a sudden, everything was dangerous.  Would they really be okay then? Other kids don’t know what real struggle is yet and that’s why they don’t know how to push through things.  They have nothing to push through.

Jazerai: But you do, because of the years you’ve spent wrestling with PCD.  So, in a way – it taught you something.

Chloe: I learned that sometimes, it’s just about getting through a tough time.

Jazerai: …and having the confidence to push through?

Chloe: Confidence is something you need all of the time.  First of all, you need it so that you’re not shy and so that you’re ready to speak in front of two million people if asked.  The second reason you need confidence is kinda like what I’m going through now, moving back to the city. You need confidence so that you’re not afraid. That way, you KNOW you’re going to make it through.

Jazerai: When you’re getting dressed in the morning, what makes you feel confident?

Chloe:  It’s all about the sneakers.

Images shot by @obianyanwu

When asked what she looks for when selecting a pair, her answer was just as easy as her vibe – comfort.  Her recent pickups include the cozy Adidas UltraBOOST and a classic pair of Nike Air Huaraches in Barely Volt, a skillful selection for a city kid who lives her life on-the-go.

Standing 5 feet tall and wearing a size 8 shoe, Chloe R. embodies confidence. The budding model/actress dominates the room, with the vibes of SZA, packed with the style and strength to match.

A dynamic young woman with a tough spirit, who gives us life by battling a disease that threatens to take her life, every, single day.  As Chloe R. is often quoted as saying, “life is what you make it” and she has definitely done the most.

Keep up with Chloe R. on Instagram. #WeAreMore