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 the SLC6A1 news, part of us was relieved to finally have a real answer, but we were immediately devastated to learn the severity of this diagnosis. We always knew something was wrong, but never imagined it was as serious as SLC6A1. It is heartbreaking.
The hardest part of being a SLC6A1 family? The lack of information and knowledge surrounding SLC6A1. This disease makes caring for your child and providing the best life possible very challenging. The unknown of what lies ahead, what regressions may occur, and what new challenges may arise are all so hard to cope with. SLC6A1 is extremely rare- and that is a very lonely feeling.
What are your dreams for Reilly? Our dream for Reilly is for her to live a happy and healthy life. That this disease will not control her, and she can live seizure-free. That she can always find her smile, and her spirit is never lost. We dream of her living a full mountain life with our family, where she can bike, ski, and enjoy the beauty that this world can offer. We dream that she knows how much she is loved, and continues to love back.
And, of course, our dream is to find a cure. A cure for Reilly. A cure for all of our SLC6A1 children.
Why would you like people to donate to SLC6A1 Connect? Because all donations go directly towards funding a cure. A CURE! The research we have going for gene replacement therapy is amazing and closer to the finish line than we think. However, this research needs the funding to continue what has been started. Every donation, big or small, is a huge win for all SLC6A1 children’s futures.