Local News

Community comes together for 9-year-old with rare condition

Posted September 21, 2013 11:14 p.m. EDT
Updated September 22, 2013 8:15 a.m. EDT

— A community is coming together to support a 9-year-old Raleigh girl who was born with a rare disease.

Stephanie Simpson has a rare disorder called Chiari malformation – a condition where brain tissue extends into the spinal canal causing severe pain. 

"When she was 3, she would start grabbing the back of her head and say 'mama hurt, mama hurt' and then she would walk and suddenly lose her balance," said Sandy Simpson, Stephanie's mother. 

Simpson organized a walk Saturday to raise awareness for children and adults who suffer from the disorder. 

"She is a warrior princess. She is strong," Simpson said. 

Nine weeks ago, Stephanie underwent brain surgery. 

Emily Griffin, a good friend, said she was by Stephanie's side in the hospital. 

"I want people to find a cure for her," Griffin said. "She told me about her disease and I wanted to do something to help."

Emily made bracelets to sell at the walk to support her friend. The money raised from the event will go towards local research. 

Dr. Simon Gregory is one of the researchers at Duke working to identify the genes that cause Chiari.

"We are studying tissue from within the cell itself," Gregory said. "It's heartbreaking to see kids of this age suffering."

It is estimated that Chiari malformation occurs in one in every 1,000 births.