Chloe Bredeson has come a long way since she was first diagnosed with tuberous sclerosis complex in 2010.
When she was 3, the Bluffton girl began experiencing seizures. Doctors traced them to the genetic disease, which causes tumors to grow in the vital organs and is the leading genetic cause of epilepsy and autism. Experts say it affects about 1 million people worldwide.
Doctors told Chloe’s parents, Amy and Matt Bredeson, about the Tuberous Sclerosis Alliance as a resource to help them learn more about the disease and connect with other families and find the best doctors. The group also works to lobby for new medications, which is how a chemotherapy drug caulled Afinitor was approved for use in 2010. Chloe began taking the drug in 2012, and it has reduced the size of her brain tumor, helped control her seizures and dramatically reduced the number of cysts in her kidneys — all caused by TSC.
To give back to the organization, the Bredesons decided to hold a Step Forward to Cure TSC walk, one of the group’s major fundraisers and held in more than 30 cities across the U.S. The Bredesons’ fourth annual walk kicks off at 10 a.m. Oct. 7 at Jarvis Creek Park on Hilton Head. Registration begins at 9 a.m., though participants can also register in advance by going to stepforwardtocuretsc.org.
There will be refreshments, kids’ activities, and entertainment by Crush Entertainment with DJ Crush. South Carolina Sen. Tom Davis is expected to speak about the use of CBD oil to treat epilepsy. Participants are encouraged to come dressed as their favorite superheroes to match the event’s theme. The walk is free, but donations to benefit the Tuberous Sclerosis Alliance are appreciated.
Photo courtesy of Christina Roberts Photography