NAME: Nevaeh Rae CURRENT AGE: 14 HOME TOWN & STATE: Winter Haven, FL DIAGNOSIS DATE: Epilepsy- 2006; SLC6A1- July 2017 PARENTS: Sarah and Todd SIBLINGS: A half brother and a half sister What it felt like when we learned our child has SLC6A1? The SLC6A1 diagnosis really didn’t change how we felt about Nevaeh’s situation.…

NAME: Garrett Coble CURRENT AGE: 8 HOME TOWN & STATE: Allen, TX DIAGNOSIS DATE: August 2017 PARENTS: Alissa & Dan SIBLINGS: Benjamin What it felt like when we learned our child has SLC6A1? When genetic testing revealed Garrett had a true genetic mutation that accounted for his severe epilepsy, autism, developmental delays, and learning disabilities,…

NAME: Charles Gabriel CURRENT AGE: 7 HOME TOWN & STATE: Chattanooga, TN DIAGNOSIS DATE: August 4, 2018 PARENTS: Chip and Judy SIBLINGS: Gemma (GiGi) What it felt like when we learned our child has SLC6A1? We immediately felt the metaphorical “punch in the gut”. It was beyond anything we could have ever imagined. We were…

NAME: Ella CURRENT AGE: 17 HOME TOWN & STATE: Seattle, WA DIAGNOSIS DATE: December 2017 PARENTS: Sarah & Jayson SIBLINGS: Maya (19) What it felt like when we learned our child has SLC6A1? We had been searching for the cause of Ella’s epilepsy and global delay since she was a baby and it was incredible…

NAME: Eleanor (Ellie) Rose CURRENT AGE: 14 HOME TOWN & STATE: Honesdale, PA DIAGNOSIS DATE: Ellie was diagnosed with epilepsy at 2 years old and received the SLC6A1 diagnosis at 12 through genetic testing- due to refractory epilepsy. PARENTS: Shawn and Christina SIBLINGS: Dylan, Charlotte, Robert, and Patrick What it felt like when we learned…

NAME: Eden Rose CURRENT AGE: 21 months old HOME TOWN & STATE: Lynchburg, Virginia DIAGNOSIS DATE: June 2019 PARENTS: Brittani and Brian SIBLINGS: Lincoln and baby brother (due late 2019) What it felt like when we learned our child has SLC6A1? When we first found out that Eden was SLC6A1 positive, it was surreal. We…

NAME: Danika Stella CURRENT AGE: 3 HOME TOWN & STATE: Platteville, CO DIAGNOSIS DATE: May 2019 PARENTS: James and Lorretta SIBLINGS: Alexis, Taylor, Willow, and a puppy named Koda What did it feel like when we learned our child has SLC6A1? When Danika was first diagnosed it felt like a bad dream that we couldn’t…

NAME: Arthur  CURRENT AGE: 4 HOME TOWN & COUNTY: Tonbridge, Kentz DIAGNOSIS DATE: May 2018 PARENTS: Lindsay and Daniel  SIBLINGS: His sister, Eden  What it felt like when we learned our child has SLC6A1?  Confusing, scary, bewildering, worrying, overwhelming and lonely. We knew something was wrong with Arthur from very early on as we could see he was having seizures throughout…

NAME: Axl CURRENT AGE: 11 HOME TOWN & STATE: Roosdaal-België DIAGNOSIS DATE: April 2019 PARENTS: Gino and Leyla SIBLINGS: His sister, Naomi What did it feel like when we learned our child has SLC6A1? To be honest we were not that surprised. Finally, after 5 years, we had the answer we were always looking for.…

NAME: Maxwell Norman Freed CURRENT AGE: 3 HOME TOWN & STATE: Denver, Colorado DIAGNOSIS DATE: Summer 2018 PARENTS: Mark and Amber Freed SIBLINGS: Riley Freed (twin) What it felt like when we learned our child has SLC6A1? We had been looking for answers for a long time, but every test was inconclusive. Then, in the…