Seven years ago, Karessa Battenfeld gave birth to her daughter, Autumn. It wasn't until Autumn was 6 months old that she realized her baby girl was special in a very unique way. "She has Dandy-Walker syndrome. It's a rare brain disorder that develops in the first four weeks of pregnancy."
Autumn can't walk and she has gran mal seizures. Medication helps, but Autumn requires complete care. "She wears diapers, I spoon feed her. She takes two different types of medications. She has her leg braces. She does have therapy, physical therapy, occupational therapy, speech, behavioral specialists, so there's a lot."
But she doesn't have to do it alone. That's because she just recently she learned she has a sister. Karessa and Harley Stephenson share a mom. And while they haven't grown up together, they aren't wasting any time now that they've found each other. They even have a tattoo that is meaningless separate, but put together symbolizes the beginning of their lives together. And for Harley, having a special needs niece has become her whole focus. "She's my world. She keeps me going every day. If she can get through her struggles, I can too and so hopefully one day I can help save the lives of people with Dandy Walker. So we are raising money for research."
The second annual Dandy-Walker Walk for a Cure is June 16th. And while the national Dandy Walker Alliance supports it, it's organized completely by Harley and her best friend Shirley Dailey - an extended family that's embracing the entire family and working to make a difference in all families affected by Dandy Walker.
The walk is at Bonaventure park of Sparks located at 2360 Wingfield Hills Road. For more information about the walk, call 775-741-6218 or email firstname.lastname@example.org
You can learn more about Dandy-Walker at www.dandy-walker.org