95ºF

San Antonio families hope to ‘Reverse Rett’ with February fundraising event

Rare disorder affects 350,000 people

Ortiz family image
Ortiz family image (KSAT)

Rett Syndrome is a devastating neurological disorder, and if you’ve never heard of it, you should be thankful that it hasn’t impacted any of your loved ones.

It can manifest seemingly out of nowhere -- when parents think they have an average, healthy baby or toddler. Suddenly their child stops developing normally. And then development actually regresses. A child may already be able to talk and walk until the disorder takes over and then, they can’t anymore. And the symptoms progress over time with seizures, breathing problems and other medical issues.

“I’m always fighting the clock,” said Olivia Ortiz, whose 11-year-old daughter Graciela was diagnosed with Rett Syndrome in 2016. “With each new day there’s a new symptom, a new regression.”

The rare disorder affects 350,000 people. Right now there is no cure, but there is hope for a cure, and that’s why fundraisers are so important to the families who have helped organize them.

Read: Rett syndrome: Rare disorder affects mostly girls, takes away motor skills and ability to talk

“I’m always looking for avenues to create more awareness for Rett because it’s so rare,” Ortiz said.

Ortiz and her husband, Cruz, a well-known artist in San Antonio, will be sharing their story at the fundraising event.

“We’re hoping our story will make it more personal," she said.

The second annual “Reverse Rett San Antonio” event will be held from 6-10 p.m. on Feb. 8 at Morgan’s Wonderland Event Center.

Passing Strangers, one of San Antonio’s most well-known cover bands from the 80s and 90s, will perform at the event. There will also be food, drinks and live and silent auctions.

The money raised will go toward the Rett Syndrome Research Trust

Click here to buy tickets to the event or donate money toward the cause.

The Reverse Rett San Antonio fundraiser will be held Feb. 8, 2020 at Morgan's Wonderland.
The Reverse Rett San Antonio fundraiser will be held Feb. 8, 2020 at Morgan's Wonderland. (Reverse Rett San Antonio)

About the Author: