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? Quade did not speak. He was able to say “mama” and “dada”, but that disappeared. He began to have a major regression with sensory issues and noise sensitivity. We noticed loss of eye contact and verbal ability, along with increased sensory aversions. Quade’s learned skills were constantly disappearing and he screamed all day. He was first diagnosed with autism and later we found that he had near constant seizure activity, day and night, even with no outward signs.
The hardest part of being an SLC6A1 family? The hardest part is realizing that we truly are an SLC6A1 Family. We have 4 children… and every single one of them inherited the gene we weren’t even aware of until AFTER our youngest was born.
What are your dreams for Quade? My dreams are ever changing for each child, with each gain and loss. My current dream for Quade is that he learns how to be in the world. It sounds so simple, but it’s not. Not even a little bit. Anyone can just be. But I want for each and every one of my children to be happy. Whether he grows up to be an engineer, a mountain climber/extreme sports enthusiast, or a constant companion in my life; my dream is that the world will be lovely for him. We hope that he will bring wonder to the world.
Why would you like people to donate to SLC6A1 Connect? Every person deserves a chance to live their best life. Some, however, need a little more help than others. If you can donate, fundraise, or volunteer, you can literally change a life- many lives- for those afflicted with this terrible disease. You’ll be changing the lives of the people who love them. There are no words that can truly explain what this means for us. It’s more than a cure. It’s quality of life and love that you help create for generations to come.