NAME: Wyatt Wayne Allen CURRENT AGE: 14 HOME TOWN & STATE: Altamont, TN DIAGNOSIS DATE: January 2020 PARENTS: Jeff & Taffi Allen SIBLINGS: Melina, Alora, and Quade What it felt like when we learned our child has SLC6A1?  I got positive results for Wyatt and Melina at the same time. They were tested through a…

NAME: Avaleigh Thorn CURRENT AGE: 2 HOME TOWN & STATE: Abilene, TX DIAGNOSIS DATE: August 2020 PARENTS: Sheryl and Elen Thorn SIBLINGS: Annistyn (10 months) What it felt like when we learned our child has SLC6A1?  When our youngest biological child moved out of our family home to go to college, we became empty nesters.…

NAME: Melina Therese Allen CURRENT AGE: 10 HOME TOWN & STATE: Altamont, TN DIAGNOSIS DATE: January 2020 PARENTS: Jeff & Taffi Allen SIBLINGS: Wyatt, Alora, and Quade What it felt like when we learned our child has SLC6A1?  We received positive results for Melina and her sibling Wyatt at the same time. They were tested…

NAME: Alora Jean Allen CURRENT AGE: 9 HOME TOWN & STATE: Altamont, TN DIAGNOSIS DATE: February 2019 PARENTS: Jeff & Taffi Allen SIBLINGS: Wyatt, Melina, and Quade What it felt like when we learned our child has SLC6A1?  1. Relief. It’s SOMETHING. And you can do something about something. 2. Confusion. How can we know…

NAME: Quade Ryker Allen CURRENT AGE: 6 1/2 HOME TOWN & STATE: Altamont, TN DIAGNOSIS DATE: February 2019 PARENTS: Jeff & Taffi Allen SIBLINGS: Wyatt, Melina, and Alora What it felt like when we learned our child has SLC6A1? ….What are the chances that this could happen twice? How did you know something was wrong?…

NAME: Rowen CURRENT AGE: 2 1/2 years old HOME TOWN & STATE: Los Angeles, CA DIAGNOSIS DATE: January 2019 PARENTS: Kristina and Michael SIBLINGS: n/a What it felt like when we learned our child has SLC6A1? When we first learned of Rowen’s diagnosis, we had no idea what it meant for her. The geneticist simply…

NAME: Paxton Lawrence CURRENT AGE: 3 HOME TOWN & STATE: Lake St. Louis, MO DIAGNOSIS DATE: July 2019 PARENTS: Aaron and Kari SIBLINGS: Hendrix (5) and Jovi (3 – twin) What it felt like when we learned our child has SLC6A1? When our pediatric neurologist first gave us the results of our son Paxton’s genetic…

NAME: William Louis CURRENT AGE: 4 HOME TOWN & STATE: Story City, IA DIAGNOSIS DATE: March 27th, 2020 PARENTS: Nate and Whitney SIBLINGS: James and another due on May 12th! What it felt like when we learned our child has SLC6A1?  Paralyzing, scary and heartbreaking. Although we felt we knew there was a diagnosis for what William was experiencing,…

NAME: Mees CURRENT AGE: 4 HOME TOWN & STATE: The Netherlands DIAGNOSIS DATE: 9-8-2018 PARENTS: Haikje & Rik SIBLINGS: Brother Tein & Sister Fiene What it felt like when we learned our child has SLC6A1? We knew something was wrong but to hear that it was a gene defect and thus something that is so…

NAME: John (Jack) Wilson CURRENT AGE: 6 HOME TOWN & STATE: South Riding, VA DIAGNOSIS DATE: June 2017 PARENTS: Joe and Janet SIBLINGS: Kayla, Allison, Claire, and Joshua What it felt like when we learned our child has SLC6A1? We felt relieved that we finally had an answer, but also an immense fear of the…