NAME: Roos CURRENT AGE: 14 HOME TOWN & STATE: Utrecht, Netherlands DIAGNOSIS DATE: February 2017 PARENTS: Joost and Rina SIBLINGS: Isa What did it feel like when we learned our child has SLC6A1?  When Roos was 6 months old, we noticed that she didn’t progress the same as other babies-  she walked at 22 months…

NAME: Harper CURRENT AGE: 3 HOME TOWN & STATE: Sun Prairie, WI DIAGNOSIS DATE: December 2020 PARENTS: Lindsay and Steve SIBLINGS: Owen (6) What it felt like when we learned our child has SLC6A1?  There was some relief that we finally had an answer after 2 years of relentless searching. However, we then experienced extreme…

NAME: Malia Kate Tingley CURRENT AGE: 5 HOME TOWN & STATE: Bondurant, Iowa DIAGNOSIS DATE: October 2019 PARENTS: Jordan and Molly Tingley SIBLINGS: Felix (3) What it felt like when we learned our child has SLC6A1?  We experienced mixed feelings when Malia was diagnosed. In a way, we were relieved to finally have a diagnosis,…

NAME: Suus CURRENT AGE: 6 HOME TOWN & STATE: Mander, Overijssel, The Netherlands DIAGNOSIS DATE: June 2017 PARENTS: Sander and Fleur SIBLINGS: Lieve (11) and Duuk (9) What it felt like when we learned our child has SLC6A1?  It was a long journey to find out that Suus had SLC6A1. The first problems appeared during…

NAME: JC (John Christopher) CURRENT AGE: 6 HOME TOWN & STATE: Mount Bethel, PA DIAGNOSIS DATE: January 2020 PARENTS: Laura & John SIBLINGS: Michael (2.5) What it felt like when we learned our child has SLC6A1?  It’s hard to put it into words, but when we learned that JC has SLC6A1 we were somewhat relieved.…

NAME: Jaxon CURRENT AGE: 4 HOME TOWN & STATE: Thornton, CO DIAGNOSIS DATE: January 2018 PARENTS: Kellie & Glenn SIBLINGS: Tyler What it felt like when we learned our child has SLC6A1?  At 4 months of age, we determined that Jaxon was delayed and would need substantial therapy to catch up. This discovery led us…

NAME: Xander CURRENT AGE: 7 HOME TOWN & STATE: Allentown, PA DIAGNOSIS DATE: February 2020 PARENTS: Cesar & Yohanna SIBLINGS: Andy, Cesar, and Miamar What it felt like when we learned our child has SLC6A1?  It was really hard to know that our child had a rare disease and there is no cure. We felt…

NAME: Pepijn CURRENT AGE: 5 HOME TOWN & STATE: Onstwedde, Netherlands DIAGNOSIS DATE: September 2018 PARENTS: Anne & Richard SIBLINGS: Liezelotte What it felt like when we learned our child has SLC6A1?  When we found out about Pepijn’s diagnosis, we felt absolutely devastated. Parents usually wish that their children grow up “normal” and without any…

NAME: Conor CURRENT AGE: 8 HOME TOWN & STATE: Oakdale, PA DIAGNOSIS DATE: June 2020 PARENTS: Nicole & Justine, Jaime & Liz SIBLINGS: Ayla, Lincoln and Lucy What it felt like when we learned our child has SLC6A1? It was a very bittersweet day. I was so relieved to have a name for my son’s…