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Zylan M.

The trickle-down effect.

There’s a lot of people-watching that happens in parking lots. If you stop and look for a minute, you’ll see all sorts of things.

People grabbing the hand of a toddler and hurrying them down the lane. Errant shopping carts haphazardly parked on the grassy medians. Someone hurriedly eating the last of their lunch or taking one final gulp of a drink. There is movement everywhere.

On one particular day last year, if you had been sitting in the daycare parking lot in Thibodaux, Louisiana, you would have seen Desaray struggling to load her son Zylan into their vehicle. This was nothing new, frankly. But what drew extra attention was the fact that Desaray was visibly pregnant, and Zylan was visibly uncomfortable. 

13 years ago, Zylan was born with spina bifida, a birth defect in which an area of the spinal column doesn’t form properly, leaving a section of the spinal cord and nerves exposed through an opening in the back.

“I knew in advance that he would have spina bifida,” Desaray told us. “The doctors saw it during a prenatal exam, so I tried to prepare the best I could. I felt like I was up for the challenge.”

Still, her mind swam with details those first few days as she tried to understand all that her newborn son was facing. He had surgery before he was even one day old, then had a shunt placed in his head, then a trach and a feeding tube. 

“The trach and feeding tube were hard to handle at first,” she admitted. “But I had a good support system and mostly figured things out on my own.”

He also has a significant lump in his back that forces him to lay crooked, but surgery would have been excruciatingly painful and potentially life-threatening. It wasn’t worth the risk. 

As he grew, transportation became a more significant challenge. Not just because of his height and weight, though that certainly played a role, but also because his legs wouldn’t bend. They were nearly always stuck in a stiff, locked-out position. That issue, combined with his scoliosis, made getting around incredibly difficult.

Fast forward to that day in the parking lot as another mom paused from loading her own child into a wheelchair-accessible van – and an idea struck. This woman had a few things in common with Desaray. She was caring for a child with a rare medical disease, and she had spent a lot of time dealing with all the frustration that could come from transportation challenges. 

She had been referred to Chive Charities through another rare disease family and had received help of her own in the form of an ADA vehicle. 

All of these families were like droplets of water, trickling down until they merged together to create a fast-moving stream.

So, on that day, when she watched Desaray and Zylan mirror an interaction she had experienced so many times before, she decided to take action. 

She could have simply noted their struggle, loaded her child into her van, and driven away. But she didn’t.

She stopped what she was doing, walked over, and changed Desaray’s life with one simple sentence: “You should check out Chive Charities and see if they can help you with a wheelchair-accessible van.”

Just like that - one interaction - and many other events unfolded.

Desaray went home, googled Chive Charities, and read more stories about the Veterans, military families, first responders, and individuals with a rare medical diagnosis we support. She was blown away, but also nervous. Would we be able to help them, too?

Then she thought of her son, Zylan. How he likes to dance, listen to music, put his hands up in the air when his favorite song starts to play. She thought of how he’s playful, and likes to be tickled. How he’s strong and brave and determined.

So she pushed her feelings of doubt aside and clicked the “apply” button.

Not long after, we read her application and saw all the ways a wheelchair-accessible vehicle could improve their lives. With the support of our donor family - the very same people who read about families like hers and reach into their hearts (and pockets) to help - we were able to fully fund the cost of a 2021 silver Chrysler Voyager from our friends and partners at AMS Vans. The total impact was $50,000.

“We love the van so much,” Desaray told us. “It makes everything so much easier. Thanks to therapy appointments, Zylan is able to bend one of his legs much better, though the other is still tight and straight. We’re able to transport him so much smoother, including going to some of his favorite places like the park and Chuck E. Cheese. Thank you so, so much.”

For Zylan and Desaray, plus his two younger siblings at home, the van has been a godsend.

All it took was one interaction. One seemingly insignificant moment where a stranger paid attention and changed a life. It reminds us a lot of people like you, reading stories like this. Yes, the monetary donations and giving enable us to help more recipients. But spreading the word, sharing stories, encouraging others to apply for help – that all makes a difference, too.

To all of you who look for the moments to help and take action, we thank you. You’re changing real lives, one interaction at a time. Become part of our movement to make the world 10% happier and DONATE HERE.

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