2-year-old girl with deadly disease gets her wish

2-year-old girl with deadly disease gets her wish

Eden Carroll suffers from Cockayne Syndrome Type B. Eden Carroll suffers from Cockayne Syndrome Type B.

June 30, 2006

By CATHARYN CAMPBELL
6 News Reporter

ROANE COUNTY (WATE) -- A two-year-old girl born with a deadly and rare disease will get her wish granted.

Eden Carroll suffers from Cockayne Syndrome Type B and her parents don't know how much time she has left.  

The inherited disorder, referred to as CS, is a form of Dwarfism and makes people sensitive to light and age prematurely.  

Eden's mother, Haylee Carroll, says it was obvious that something was wrong with her daughter. They visited dozens of doctors but no one could give a diagnosis. 

In March, the family traveled to Johns Hopkins Hospital in Baltimore, Maryland where an eye doctor finally identified Eden's condition. 

Carroll says, "If you don't get an answer from the doctor you are seeing, go somewhere else.  Eventually, you will find someone that knows the answer."  

Carroll now knows the disease is genetic. 

Her oldest son died from CS in 2003, five days after his fifth birthday. Doctors never knew what was wrong with him until now."They just threw out different diagnoses and said it was a fluke, and that it shouldn't happen again."

Eden will also likely lose her life too soon. Children with CS typically only live three to five years. Carroll says, "You just try not to think about it."

Little Eden loves to play outside but she can't go out in the sun. She sunburns easily and her eyes are extremely sensitive to light.

Now the Make a Wish Foundation of East Tennessee wants to help. 

Carroll says the organization is coming next week to build a special playground for Eden in the family's basement.  "You just have to enjoy them and let them have fun while they are here."

An early onset or congenital form of Cockayne Syndrome, the type Eden has, is apparent at birth.

The oldest known CS patient is in the late 30's but many die in infancy.

The severity of the genetic damage and the quality of care are important factors in determining a CS patient's lifespan.

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