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Chloe’s Story

On April 30, 2010 our world was turned upside down when we learned our sweet little girl had a genetic disease called Tuberous Sclerosis. TS affects people in a variety of ways, causing tumors in the brain, eyes, heart, kidneys, skin and lungs. It is the leading genetic cause of epilepsy and autism.

For Chloe, TS means abnormal growths in her brain that cause seizures, a brain tumor, lesions in her eyes and white spots on her skin. Chloe also has Polycystic Kidney Disease, which is sometimes related to TS. Her main symptom of this is high blood pressure. She will eventually need a kidney transplant. We are praising God for Chloe's healthy heart and praying for total healing.


Latest Journal Update

Calling all superheroes!

It's almost that time again - time to break out those superhero capes and Step Forward to Cure TSC! This year's SC walk for the Tuberous Sclerosis Alliance is planned for 10 am Sept. 26 at Jarvis Creek Park on Hilton Head Island. Registration will begin at 9 am, or if you're not a fan of early mornings (like me), you can go ahead and register online now. Just follow this link to sign up or to make a donation if you can't be there with us:

After the walk, we'll have a light lunch, some fun activities for the kids, and entertainment by DJ Crush of Crush Entertainment and island favorite Cappy the Clown. Firefighters with the Town of Hilton Head Island Fire Rescue will also be there with a big red truck for the little ones to check out.

SC Sen. Tom Davis will join us to share a little about what he has done to help South Carolinians struggling with epilepsy. Since epilepsy touches about 85% of people with TSC, this is a big deal for us!

Also new this year is a silent auction. So far, we have donated items from Whole Foods, The Joint and The Light Post. We still need more donations so if you think of anyone who might want to donate something, please contact me at or 843-290-2741.

Big thanks go out to: BFG Communications, The Coyne Team at Keller Williams Realty, Seaside Pediatrics, Lowcountry Therapy Center, Novartis, Cyberonics, Lids, Lundbeck, Pillar Hotels & Resorts, and MetLife for sponsoring this walk. We are also very grateful to Whole Foods, Street Meet, Chick-fil-A and all the other wonderful people who have helped make this happen.

Come learn something new, help make a difference for the 1 million people with this disease, and have some fun with Super Chloe and her crew! Hope to see you all there!