Our Kids
Charlie
NAME: Charlie CURRENT AGE: 7 HOME TOWN & STATE: Kansas City, MO DIAGNOSIS DATE: August 2019 PARENTS: Nate and Kim Fry SIBLINGS: Addie What did it feel like when we learned our child has SLC6A1? Devastation. It was the scariest feeling in the world to look into the eyes of a doctor who said not…
Read MoreLennon
CHILD’S NAME: Lennon CURRENT AGE: 8 HOMETOWN & STATE: Eau Claire, Wisconsin DIAGNOSIS DATE: April 2021 PARENTS: Breana and Neil SIBLINGS: Abram and Vera What did it feel like when we learned that Lennon had SLC6A1? We have a unique story learning about her diagnosis. She was officially diagnosed in 2021 but we were not…
Read MoreAdonaï
Nom de l’enfant: Adonaï Âge actuel: 2 Ville natale et état: Realmont, France Date du diagnostic: Août 2024 Parents: Sandy et Dylan Frères et sœurs: Kingston et Djeyllie Comment as-tu su que quelque chose n’allait pas ? Nous avons des doute que quelque chose n’allait pas car Adonaï pleuré beaucoup et elle fesait beaucoup de…
Read MoreEverett
CHILDS NAME: Everett CURRENT AGE: 11 HOMETOWN & STATE: Manhattan Beach, CA DIAGNOSIS DATE: February 2022 PARENTS: Brett and Jenny SIBLINGS: Anderson and Sami How did you know something was wrong? Everett kept falling out of the blue and would shake for a few seconds after each fall, then get back up and run. This started happening hundreds of times a…
Read MoreHaley
CHILDS NAME: Haley CURRENT AGE: 4 HOMETOWN & STATE: Noblesville, IN DIAGNOSIS DATE: October 2022 PARENTS: Matthew and Emily SIBLINGS: Wesley What did it feel like when we learned our child has SLC6A1? It was a combination of relief, fear, concern, and determination. The hardest part of being a SLC6A1 family? Not having clear answers…
Read MoreMadeline
CHILDS NAME: Madeline CURRENT AGE: 3 HOMETOWN & STATE: Newport News, Virginia DIAGNOSIS DATE: July 2022 PARENTS: Sarah Wells & Richard SIBLINGS: William & Charlie What did it feel like when we learned our child has SLC6A1? We were overwhelmed with sadness and instantly hit with the gravity and complexity of the disease. The hardest…
Read MoreAubrey
CHILDS NAME: Aubrey CURRENT AGE: 6 HOMETOWN & STATE: Freedom, WI DIAGNOSIS DATE: May 2022 PARENTS: Justin and Erika SIBLINGS: None How did you know something was wrong? Aubrey started having hundreds of seizures a day at 3 1/2 years old. With the seizures came regression in areas of cognition, movement, coordination and balance. We…
Read MoreReilly
NAME: Reilly CURRENT AGE: 2 HOME TOWN & STATE: Steamboat Springs, CO DIAGNOSIS DATE: February 2022 PARENTS: Will and Becca SIBLINGS: Mackenzie What it felt like when we learned our child has SLC6A1? We felt mixed emotions, as we had been searching for answers for Reilly since she was 6 months old. When we received…
Read MoreAnnistyn
CHILDS NAME: Annistyn CURRENT AGE: 2 years old HOMETOWN & STATE: Abilene, TX DIAGNOSIS DATE: March 2021 PARENTS: Sheryl & Elen Thorn SIBLINGS: Avaleigh What it felt like when we learned our child has SLC6A1? Our oldest daughter, Avaleigh, was diagnosed with SLC6A1 the year prior which stunned us beyond words and threw us into a…
Read MoreCoco
NAME: Coralynn Paige (Coco) CURRENT AGE: 5 HOME TOWN & STATE: St. Michael, MN DIAGNOSIS DATE: April 2022 PARENTS: Lindsay and Cody SIBLINGS: Milo (3) What did it feel like when we learned our child has SLC6A1? We have experienced a wide variety of emotions surrounding Coralynn’s SLC6A1 diagnosis. Overall, we are glad to finally…
Read More