Maxwell’s Story

SLC-Maxwell2smI’m Maxwell and I’m one year old. I have a twin sister named Riley and a kitty cat named Nittany, and most of the time I think they’re both pretty great. Most of the time…

I was diagnosed with SLC6A1 in May of 2018, just a couple months after my first birthday. Mom and Dad knew something was up long before that, because I wasn’t doing a lot of the things my sister was doing. They took me to see a lot of doctors and therapists, but everyone just kept poking me with needles and scratching their heads. They couldn’t figure out why I wasn’t doing things like sitting up, holding my bottle, or reaching for toys. Finally, after the doctors took a good long look at my genome, they figured out what was going on. Mom and Dad had never heard of SLC6A1 because it’s so super rare, but right away my mom started doing research and learning everything she could. She found a small group of SLC6A1 parents on facebook, but couldn’t find much else in the way of support or information for parents. That’s when she decided to found SLC6A1 Connect, and though she’s so busy she makes my head spin, she still makes time to tickle my tummy, read to me and my sister, and take us to play at the park.

Now I do all different kinds of therapy to help me catch up with my sister, who is already walking. I get to hang out in a cool sensory room, swim in the pool, and I even get to ride a horse! (But, to be honest, I prefer the fake horse!) Mom says I’m reaching new milestones every day, and today I even started clapping! I’m excited to see what adventures my life will bring, and I’m super thankful for all the doctors and scientists who are helping me and my friends.

*Thanks to Aunt Julie for helping me write this!