Researchers Study Oklahoma Girl With Syndrome X
OKLAHOMA CITY - Time goes by so quickly and sometime as a parent, you wish time could just stand still or at least slow down.
For one Oklahoma family, it seems that has happened.
"She's sweet, she laughs, has a huge smile," said Felicia Qualls about her daughter Layla.
When little Layla entered the world, her parents, Jesse and Felicia, felt their family was complete. Being their second child, they knew what to expect, plenty of diaper changes and late night feedings - or so they thought.
"She just wouldn't eat," said Jesse Sapp, Layla's father. "I mean we couldn't get her to drink a bottle to save her life."
Not eating was just the first sign and even when she did start eating, she wouldn't gain any weight. They soon realized Layla would take them on a different path. A timeless path where it appeared their little girl was not aging.
"She's growing but it's just not at the rate you would expect," said Jesse.
Celebrating her third birthday on May 3, Layla still looks like a 9 to 10 month old baby, weighing only about 19 pounds. And doctors are baffled as to why.
"She's seen, it seems, like every specialist there is, everything comes back normal," said Jesse.
"And that is frustrating because you know after all those tests, they're all normal but we know she's not normal," added Felicia.
Layla isn't alone though. Researcher Dr. Richard Walker has found seven children worldwide including Layla, who have this extremely rare condition, called Syndrome X. He hopes to reveal the condition's genetic blueprint to find out which genes are slowing down the aging process. Dr. Steve Horvath is conducting the clinical tests for the study. We visited him at his research lab on the UCLA campus.
"I'm the father of a three year old girl so I felt very sympathetic for the families," Dr. Horvath said.
He's passionate to find out why the Syndrome X children do not aging physically and mentally. So his team collected blood samples and extracted the DNA for analysis.
"We did everything right, the whole protocol worked very well, very high quality DNA," he said.
The results, though, were disappointing. Researchers found the blood of the Syndrome X children doesn't look any younger than that of a normal child.
"It would have been nice to say we found a footprint of the mechanism that could explain that condition," said Dr. Horvath. "As a researcher you need to continue searching."
They will continue searching for the answers Layla's family would like to have by collecting more tissue samples for analysis.
"It would be nice to kind of know, maybe they'll discover something but it doesn't matter," said Jesse.
Because they know it doesn't change the way they feel about her or the joy she brings to their lives.
"She might be like this forever and she might not walk and do other things that other children do but that's okay with us, we still love her," said Felicia.
Researchers are also doing a genetic study on the Syndrome X children. Those results are not complete yet.