MACON, Georgia (41NBC/WMGT) - Ashley Alexander has three healthy children, but her fourth, 4-year-old Lillie, wasn't so lucky.
"We knew pretty much right away that something was not right when she was born," says Ashley.
Born with a disease many doctors misdiagnose as autism, Lillie has Rett Syndrome. The disorder is found in only 4,000 people or so across the country. It discriminates mostly based on sex, found on the X chromosome in girls. Boys who have the disease are almost sure to die from it, since they have only one X-chromosome. Most girls are able to learn basic motor and speech skills, then when the disease sets in, they lose those abilities.
Ashley was shocked to find out her daughter, who hadn't even spoken her first word yet, had it.
"She was not able to sit up by herself, she didn't roll over, she didn't press off of her feet which is a really big indicator that something wasn't right," Ashley says.
There's hope on the horizon for lillie. Doctors in Boston injected lab mice with Rett syndrome, and then were able to reverse the disease with a trial drug.
Ashley just hopes little Lillie can have a fulfilling childhood while they hope for a cure.
"She loves Barney; She swings and she goes outside, she swings and she goes outside, and they play games, and she does have physical therapy and she loves to read books."
Lillie's favorite bedtime story is Curious George. She laughs as her mother reads it to her.
So the Alexanders fight on--Ashley is the Regional Representative for the International Rett Syndrome Foundation (IRSF), helping in the fight to find a cure for her daughter. She says staying positive and hopeful are the key to her and Lillie's happiness.
"I just don't wanna be negative, I think if you're negative it just makes the situation worse," Ashley affirms, "and it makes everyone miserable around you, and it can make her miserable as well, so if you keep a positive attitude then you feel better and she feels better."
Lillie has an infectious laugh and smile, and even though she can't say it, she can show she's a happy girl, despite her disabilities.
2ND ANNUAL STROLLATHON TO BENEFIT RETT SYNDROME RESEARCH
You can help in the fight to cure Rett Syndrome. The 2nd Annual Strollathon is a free event where donations are accepted, and all proceeds go to research this debilitating disease and helping kids like Lillie. There will be tons of fun for the kid and adults starting at 10 am Saturday, October 6th at Central City Park. For more information visit irsf.com.