Xander

NAME: Xander

CURRENT AGE: 7

HOME TOWN & STATE: Allentown, PA

DIAGNOSIS DATE: February 2020

PARENTS: Cesar & Yohanna

SIBLINGS: Andy, Cesar, and Miamar

What it felt like when we learned our child has SLC6A1? 

It was really hard to know that our child had a rare disease and there is no cure. We felt devastated, But we also felt a relief that finally we had a name for all the symptoms Xander was having. 

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?

It can be lonely sometimes. Not having the right support system we need when a child has a rare disease diagnosis. However, We feel grateful because we found SLC6A1 Connect and the entire community is amazing. We have another family.

What are your dreams for Xander?

There are so many things we want Xander to be able to do, but in the end, we just want him to be healthy, happy and thrive in life. That he can be whoever he wants to be.

Why would you like people to donate to SLC6A1 Connect?

Your donations get us closer to our goal of finding treatment and eventually a cure for SLC6A1. Please consider donating and help us provide a better and healthier future for our child.