CHARLOTTE, N.C. — The first treatment for Rett syndrome to receive FDA approval was just announced last week.
What You Need To Know
- The FDA approved a treatment for Rett syndrome
- In October, Spectrum News 1 spoke to a family who's been waiting for this announcement
- The Foard family says this approval will pave the way for more treatments
Rett syndrome is a rare genetic neurological disorder.
The International Rett Syndrome Foundation says the disorder affects a person’s ability to talk, walk, eat and even breathe easily.
In October, we introduced you to Ella Foard and her family. Ella lives with Rett syndrome.
Her family says they’re excited about this new development.
“That we have a potential treatment to help with some of the symptoms that we're dealing with, with Rett syndrome,” Ella's dad, John Foard said. “Like what we are showing you right now with her constant hand movements and not able to calm herself with her hands. She constantly has to be busy.”
“And so having a medication to possibly help with that is a game-changer in the world of Rett syndrome,” he added.
John says he was involved with the board of directors for the International Rett Syndrome Foundation when clinical trials for this drug started.
“And to watch all of the work we put into action back then, come to fruition now that the medicine has finally been approved by the FDA is just a huge milestone, and so it’s just a lot of relief that we are finally getting somewhere,” he said.
The Foards say it could help with her daily activities, from doing school work to eating.
Currently, her family says she can’t hold onto things for more than three seconds.
“Maybe hopefully one day we’ll be able to teach her how to feed herself and grab a cup and drink from a cup,” John Foard said.
This is exciting news after a tough start to 2023 for Ella.
In January, she spent three straight weeks in the ICU
She’s now home, doing well and is set to graduate from school this year.
According to the International Rett Syndrome Foundation, the drug is expected to be commercially available in the U.S. at the end of April.