CURRENT AGE: 3
HOME TOWN & STATE: Bronx, NY
DIAGNOSIS DATE: February 2020
PARENTS: Cesar & Yohanna
SIBLINGS: Andy, Cesar, and Miamar
What it felt like when we learned our child has SLC6A1?
We felt a wide variety of emotions. First, relief… because we finally had a name for what our son was experiencing. It was not just autism, and we always knew there was something more at stake. And, second, immense fear… because we did not know what to do to help our son until we found SLC6A1 Connect.
How did you know something was wrong? When Xander was a baby he did not show an interest in anything- not in toys, people, or animals, and his eye contact was lost and unfocused. As parents, we knew there was something going on. There was this gut feeling inside of us that kept telling us something was terribly wrong. We tried to dismiss those feelings but they kept growing and growing until we needed to accept what those instincts were telling us.
The hardest part of being an SLC6A1 family? The fear of the unknown. This disorder is not known to many people, and even medical professionals are still learning about it. It is hard to imagine how your child’s life is going to unfold with a disease that nobody can fully explain.
What are your dreams for Xander? We want our Xander to live a happy and healthy life without medication and therapy. We want him to be able to enjoy time with other kids.
Why would you like people to donate to SLC6A1 Connect? Your kind donation will be used to advance research and a treatment for our son and all children dealing with this disease. You’re giving them the gift of life and that gives SLC6A1 families hope. We cannot thank you enough for your kindness.