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 to search for a diagnosis so that we could find the right medication to cure him. When we got his SLC6A1 diagnosis we were absolutely devastated; we were told this was a permanent life long affliction with no cure.
The hardest part of being an SLC6A1 family? There are so few SLC6A1 families. Jaxon was the first patient in the state of Colorado to be diagnosed with this genetic mutation and we felt completely isolated. There was no one that could identify with us and no one that could understand what our daily struggles were like.
What are your dreams for Jaxon? I just want Jaxon to experience the world the way the rest of us do. He is truly an amazing human that is trapped inside of a body that isn’t wired to communicate with the outside world. I dream of a day where I can hear “I love you Mommy” but, even more so, I dream of the day he can share his story with the world.
Why would you like people to donate to SLC6A1 Connect? As a result of the amazing mother that started this organization, our children have a chance to be cured through gene replacement therapy. Money is the only thing standing in the way of Jaxon living a typical life. Every donation- big or small- brings us one step closer to that reality.