Family pushes for treatment of fatal disease

Oliver Springs family pushes for treatment of fatal disease diagnosed in three siblings

Posted:
When little Eris Carroll was born almost a year ago, her parents hoped for the best. She soon started to show signs of Cockayne Syndrome. When little Eris Carroll was born almost a year ago, her parents hoped for the best. She soon started to show signs of Cockayne Syndrome.
The genetic disorder claimed the lives of her older brother and sister. The genetic disorder claimed the lives of her older brother and sister.
"We kind of knew right away that yeah, there's something different. She looked pretty much just like him," Haylee Carroll said. "We kind of knew right away that yeah, there's something different. She looked pretty much just like him," Haylee Carroll said.

By JILL MCNEAL
6 News Anchor/Reporter

OLIVER SPRINGS (WATE) - A local family is working toward a cure for a fatal disease that has been diagnosed in three of their children called Cockayne Syndrome. It causes extreme sun sensitivity and premature aging with an average life span of three to seven years.

When little Eris Carroll was born almost a year ago, her parents hoped for the best. She soon started to show signs of Cockayne Syndrome, the genetic disorder that claimed the lives of her older brother and sister. Ian died first in 2003 at just five years old.

"We never got a diagnosis for him. They just told us whatever happened was a fluke," said mother Haylee Carroll.

It seemed that might be true. Their son Gage was born next, healthy, now 12 years old. Daughter Eden followed two years later.

"We kind of knew right away that yeah, there's something different. She looked pretty much just like him," Carroll said.

Eden was diagnosed with Cockayne Syndrome at two and a half, and died at age five. When both parents are carriers, their children have a 25 percent chance of having the disorder. 6 News profiled her back in 2006 when the Make-A-Wish Foundation built her an indoor playground so she could avoid the sun.

Carroll said her next two pregnancies were unplanned. Three-year-old Ivy is healthy. Then  came baby Eris. 

"I never thought I would be doing this again, ever. Even though she's a blessing, it's still hard knowing that we're going to lose her. You can't imagine looking at her that she's going to decline, that her body's going to age," Carroll said.

There are only an estimated 50 children in the United States living with a diagnosis of Cockayne Syndrome right now, and several of them are coming to Knoxville this weekend to have their blood drawn by a researcher from Seattle hoping to develop some sort of treatment or cure for the future.

"They'll have something that can help them. They can figure out what's causing their little bodies to age like this, stall it or something. That would be amazing," Carroll said.

The Carroll family is hosting a fundraising walk for the Cockayne Syndrome Network Saturday at 10 a.m. at Arrowhead Park in Oliver Springs. Money raised will go toward support for patients and their families, plus education about the disease and research for treatment.

Powered by WorldNow

1306 N. Broadway NE Knoxville,
Tennessee 37917

Telephone: 865.637.NEWS(6397)
Fax: 865.525.4091
Email: newsroom@wate.com

Can’t find something?
Powered by WorldNow
All content © Copyright 2000 - 2014 Young Broadcasting of Knoxville, Inc. A Media General Company.