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Neji

Microcephaly and cerebral palsy can't keep her from loving life

There are only a few things in the world that bind people together like family.

Shared DNA, love of country, common language, having the good fortune to be a Fightin’ Texas Aggie – they’re all connections so deeply rooted there’s no getting-to-know-you required. Chive Nation is like that, too. See a BFM sticker on the back of a car or KCCO emblazoned on a t-shirt, and you know you’ve found home.

It’s how we came to know Neji.

 

Neji and her family are brand new to Chive Nation, but they have the family thing down hard. They’re tight-knit, devoted to each other, and they love to cook, so I’d say it’s a win for us.

Allow me to explain how we got from Point A to Chive Nation: Neji’s mom is Jordan. Jordan’s godfather is Dennis. Dennis owns Bernie’s Hardware (Bernie was Dennis’ dad). Kelsey Turmon works at Bernie’s. Kelsey is also an admin for Nebraska Chive. Which brings us to Chive Nation. Through the transitive property, we’re family. Math!

 

This girl. She’s a force of nature.

 

She's fearless.

 

She loves life.

 

The world is her oyster, and she wants to explore it all. By the way, “Neji” is “survivor” in Derja, the everyday language of Tunisia.

 

It was a rough beginning for Neji to say the least. When her mom Jordan was six months pregnant, she was in a car accident that left her back, neck, and spirit badly broken. Thankfully, her baby survived.

 

“There was bleeding in her brain,” Jordan explained. “We weren’t sure what that meant or what her diagnosis might be. All that was certain was no matter what, she would be born into the perfect family for whatever may come. A family that would love and support her and always put her above it all.”

 

It’s what they do.

The answers came immediately while Neji was in the NICU. She had microcephaly (small head), damage on the left side of her brain, and more hemorrhaging. Doctors told the family they wouldn’t be able to formally diagnose her until age three, but they prepared for cerebral palsy.

 

As time went on, Neji’s physical limitations increased. The right side of her body was so much tighter than the left; she couldn’t control her arms or legs very well; she couldn’t sit up on her own, crawl, walk, or talk. There were specialists, surgeries, and therapy, but also smiles, laughing, exploring, adventure, and so much love.

 

And cooking. Because, family.

 

“We can stand her up at the counter and she helps us cook.” Jordan says it’s one of the only things they can really do together well. She loves play kitchens and play food, and is currently stashing play food in her bed in lieu of a security blanket, she loves it so much.

I feel ya, girl. Not on the oatmeal, though.

 

When she’s not gathered ‘round the kitchen island whipping a little somethin’ up, Neji relies on a motorized wheelchair to get around. And trust me, she’s got places to go.

 

“Her grandpa takes her on a trip every year,” Jordan said. It’s a splurge well worth the hard work and saving all year.

 

She’s been to Africa, every ocean, the tops of mountains, parasailing, canoeing, and horseback riding just to name a few. She delights in trying new things, especially new food, and her enthusiasm for each new day is infectious. I know you’re smiling right now and I don’t blame you.

 

Neji’s getting older – and heavier – she’s almost eight. She absolutely loves school, reading and making books, going to the park, and hanging with her best friend Annabelle. Getting her in and out of her chair and the car is hard, but she needs to get out, be with people, see the world. The older she gets, though, the more aware of her disabilities and differences she becomes.

 

“It’s probably the hardest thing, how much she wants to be included. When she realizes she can’t do it, she will point to her legs or arm or shake her head; she’s telling me that’s why she can’t participate. I’ve had holidays where I asked her what she wants if she could have anything, and again she points at her legs. I have to leave the room so she doesn’t see me break down. Little does she know I would give up my legs to her in a heartbeat,” confessed Jordan.

 

Actual footage of the second my heart ripped in half.

 

Same.

There are a few tricks that give Neji a little taste of average kid life. She has an adaptive bike she’s learned to pedal on her own; she can walk a little with the help of a walker; she can control her motorized wheelchair all by herself; and she has an iPad at school she uses for communication. But there’s a big, beautiful world out there waiting for her, and we don’t want her to miss a minute of it because she can’t get there.

 

How could we not?

Chive Charities granted Neji’s family $51,000 to cover this wheelchair-accessible van (Neji has already mastered the ramp), plus a new iPad for communicating at home, a Tomato Soft-Touch Sitter, and a GoTo Seat (those are both nifty adaptive chairs that build strength and keep Neji upright). We know these few items will make Neji’s life infinitely richer and her family’s lives far easier, and we’re so grateful our Green Ribbon Fund has such big-hearted donors. Big thanks as always to BraunAbility for their help making this dream come true!

 

We absolutely can’t wait to see what adventure Neji goes on next, and we know it’ll be filled with joy, love, and family. Hopefully she’ll wear her KCCO shirt and send us lots of pics. Maybe a postcard?

You can be the hero for the next fearless survivor like Neji. Click HERE to become a monthly Green Ribbon donor and get ready for the ride of your life.


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