Hope for Charli

Support Stevi and Aaron with Charli's medication and care costs.

UPDATE: Thankfully, Charli's medication was just approved for insurance coverage as of TODAY (11/1) — so we have adjusted our goal to reflect that. The money donated will cover her hospital bills, journey to meet with disease specialists at Nationwide Children’s in Ohio, and any near-future care-related costs. THANK YOU ALL SO MUCH.

Charli is the sweetest three-year-old girl and her smile is contagious. She is filled with so much curiosity and joy! She will stop and smell every flower, jump in every puddle, and point out every butterfly she finds. Her family is constantly inspired by the happiness she so easily finds in the little things. Some of her interests are a bit more unusual—like her enduring obsession with eggs—but, like many kids her age, she loves dinosaurs, books, animals, cartoons, and playing with her friends at school. But for being so young, Charli is facing an unimaginable challenge—she has been diagnosed with CLN6 Batten Disease.

Batten Disease is a rare, terminal, inherited neurodegenerative disorder that affects the brain and nervous system. Over time, it causes seizures and leads to loss of vision, mobility, speech, and cognition. Right now, there is no cure for this devastating condition. However, there is hope. A medication called Miglustat has shown promise in slowing the progression of symptoms, helping to give Charli more precious time to enjoy life—and for her family to experience the love and joy she brings to their lives.

Unfortunately, Miglustat is currently not covered by insurance. And at $2,000 per month, the cost of treatment is overwhelming for her parents, Stevi and Aaron. So, we’re turning to our community for support.

Every donation will cover the cost of Miglustat and other necessary treatments for Charli's care—like seeing a team of CLN6 Batten Disease specialists at Nationwide Children’s in Ohio or, when needed, making the family home more accessible for Charli.

Whether you’re able to contribute financially or help by sharing this page, your support means the world to our family. Thank you for helping us fight for Charli and for giving her a chance to keep smiling and bringing joy to everyone she meets.