BIRMINGHAM, Ala. (CBS42 Community) – Since her daughter was first diagnosed with Rett Syndrome roughly six years ago, Marie Bateh has worked to raise awareness about this rare genetic disorder.
“To have a child with a rare disease makes you feel kind of alone. And then to know that there’s people out there that actually recognize that there’s a need for supporting research for medical professionals that serve these children is enormous,” said Bateh.
Sarah Katherine “Suki” Bateh is almost 8-years-old. She was diagnosed with Rett Syndrome as an infant and has spent many days at the Civitan International Research Center working with Dr. Alan Percy, MD.
“Dr. Percy is obviously world renowned and famous for his knowledge base of Rett Syndrome. He studied with Dr. Andres Rett who named the disease,” Bateh said.
Rett Syndrome is only one in thousands of rare genetic disorders.
“That is a physical impossibility for a single center, so we work on certain ones where we have expertise or interests and we promote those. The work in these areas is made possible because we have the various forms of research here. We have students, graduate students, postdoctoral students, or fellows that gives us the opportunity to expand the research base for a number of different disorders,” Percy said.
The groundbreaking research coming out of the Civitan International Research Center has changed lives worldwide since the door’s opened in 1992.
“The Civitan Research Center is a place where fundamental discovery research takes place,” said Dr. Lucus Pozzo-Miller, PHD. “The main areas of research are intellectual disabilities which are the points of interest of the Civitan Foundation. So the basic science is fundamental discovery science that we perform here are applicable to disorders that affect children throughout the world.”
Children, like Suki, who has made remarkable progress during her time with Dr. Percy as she and others benefit from the medical advancements made at the center.
“I suspect that in the in the next 20-years of the Civitan Center, we’re going to see even more remarkable progress then we’ve had in the past 20-years. We’re taking advantage of all of the great discoveries that are made in institutions around the world. I think the future here is really quite bright! However, we need to have funding and we are reliant on the Civitan Foundation,” Percy said.
“They don’t just touch the lives right here, (the researchers and doctors at the center) also affect everybody that comes here from all over the country and the world. I still believe a miracle is going to happen. It’s just going to take some money to get there.”