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You might hear the gentle plucking of a ukulele she hasn’t quite learned to play, but holds like a pro. You might see her reach, again and again, for the kitchen faucet, enchanted by the sound of running water.

Chloe is four years old. She’s nonverbal, nonambulatory, and one of fewer than 100 children in the world diagnosed with ALG13-Congenital Disorder of Glycosylation, an ultra-rare genetic condition that impacts nearly every aspect of her development. But Chloe doesn’t sit still for long. She has a spirit determined to explore every corner of the house and every bit of possibility.

“She doesn’t walk on her own yet,” her mom, Ilene, explained. “But she’s crawling everywhere. You have to be on top of her—she’s always on the move.”

That movement didn’t come easily. By six months old, Chloe wasn’t meeting milestones. She was quiet, content to sit in a bouncer, not yet rolling or smiling much. A few months later, her parents started noticing strange, jerky movements. 

When her father searched for answers online, he stumbled across a video of infantile spasms and had a sinking feeling he was seeing the same thing in his daughter. 

He was right.

It was the beginning of a whirlwind. Chloe was diagnosed with infantile spasms and began a series of hospital visits, tests, and medications. Eventually, genetic testing confirmed a spontaneous mutation of the ALG13 gene, an incredibly rare variant that wasn’t inherited from either parent.

That first year, Ilene said, was “constant chaos.” Between seizures, side effects, and medication trials, it felt impossible to breathe. But over time, as Chloe stabilized, something shifted. “For the past two years, knock on wood, she’s been doing better physically,” Ilene said. “She’s getting stronger.”

And with strength came momentum. Chloe began pulling to stand. Then walking with just one arm held. It wasn’t just progress, it was potential.

That’s when Ilene turned to Chive Charities.

For children with rare neurological conditions, traditional therapy—one or two sessions a week—isn’t always enough. Chloe needed a more intensive program to help her brain develop the neuroplasticity required for meaningful, lasting change. The problem? Insurance wouldn’t cover it.

So, thanks to the Chive Nation community, we were able to step in with a $5,200 grant to fund two weeks of intensive physical and feeding therapy. It might sound like a small window, but for Chloe, it’s a chance to build on hard-won progress and keep moving toward independence.

“To not have to worry about how we’re going to pay for it... There are no words,” Ilene said. “Just crossing one thing off the list—one less thing to fight insurance about—it means everything.”

Ilene is the kind of mom who juggles appointments, paperwork, and progress charts in her sleep (or more accurately, after everyone else is asleep). She’s also candid about the emotional toll: the guilt of divided attention between her three daughters, the exhaustion, the loneliness of parenting a child with an ultra-rare diagnosis that most people have never even heard of.

“There were two years where I didn’t take care of myself at all,” she said. “But I started walking, just taking time to go outside, be alone. It helped. And I have help from family, which I don’t take for granted. I know not everyone has that.”

She also found an unexpected lifeline through Facebook, connecting with other moms whose kids share the same condition, who understand the complexities of seizures, G-tubes, and nonverbal cues without needing an explanation.

“We’ve never even met in person,” she said. “But I talk to them more than some of the people I’ve known for years.”

Now, Chloe is working on fine motor skills, using a walker at home, and even beginning potty training. Her favorite activities—music and water—offer daily doses of therapy disguised as play. 

Ilene is even hoping to get a water table for the backyard this summer, something tall enough for Chloe’s long legs and motivating enough to inspire a few more steps.

“She’s almost there,” Ilene said. “She just needs a little push.”

And that’s exactly what this therapy provides.

At Chive Charities, we know that rare diagnoses come with extraordinary challenges. But they also come with extraordinary kids—and families—who fight every day for a brighter future.

To Chloe, thank you for reminding us that music doesn’t need words, that independence starts with one step, and that even the rarest stories deserve to be heard.

And to our donors, thank you for being the push Chloe needed.

If you believe in changing lives like Chloe’s, join our donor family today. Your generosity doesn’t just cover grant items—it fuels hope, healing, and happiness for families who need it most.

Help us make the world 10% happier, one incredible story at a time. DONATE HERE.