When Lucia was born, she was a happy, healthy baby. For the first several months, everything seemed completely typical. Then, around 9 months old, we began noticing that she was falling behind developmentally. She struggled with motor skills, feeding, and eventually began losing skills she had already learned.

After months of evaluations, therapies, and genetic testing, we finally had an answer: Lucia has Rett Syndrome.

Rett Syndrome is a rare genetic neurological disorder that primarily affects girls. It can cause children to lose the ability to speak, use their hands purposefully, walk, and perform many of the everyday things we take for granted. It can also cause seizures, breathing and gastrointestinal problems, movement difficulties, and other serious complications.

Today, Lucia is 2 years old. She is a sweet, happy, determined little girl who loves music, books, playing outside, giggling, and smiling. She works incredibly hard in therapy every week, but Rett Syndrome continues to take things from her that she should never have to lose.

We don’t want to accept that this is her future.

That’s why we’re hosting “Lucia’s Little Light” this October in Charlotte. We are raising money for the Rett Syndrome Research Trust (RSRT), an organization dedicated to finding a cure for Rett Syndrome by funding groundbreaking research focused on correcting the genetic cause of the disease.

There is real hope. Researchers have made remarkable progress toward treatments that could address Rett at its root—but that research needs funding to keep moving forward.

Our goal is to raise donations in honor of Lucia and for every child and family affected by Rett Syndrome. Whether you donate, share Lucia’s story, or join us at our event, you are helping us fight for a future where Rett Syndrome no longer determines what our children can do.

Join us for a stroller walk with coffee, and donuts, raising funds for Rett syndrome research. Help us keep Lucia’s little light shining!

RSVP: https://www.eventbrite.com/e/lucias-little-light-a-stroller-walk-for-rett-syndrome-research-tickets-1998123047824?aff=oddtdtcreator&keep_tld=true

Date: Saturday, 10/24/26

Location: Colonel Francis J. Beatty Park - Medium Shelter #1 (search The Colonel Bike Park on Google Maps)

Time: 9:30AM