Everett

CHILDS NAME: Everett

CURRENT AGE: 11

HOMETOWN & STATE: Manhattan Beach, CA

DIAGNOSIS DATE: February 2022

PARENTS: Brett and Jenny

SIBLINGS: Anderson and Sami

How did you know something was wrong?
Everett kept falling out of the blue and would shake for a few seconds after each fall, then get back up and run. This started happening hundreds of times a day. And around this time his eyes started fluttering non stop.

What did it feel like when we learned that Everett has SLC6A1?
When Everett was diagnosed it felt like such a huge relief. All my concerns felt validated. All the guilt I carried because I couldn’t help my son now gave me hope to have more answers with a better team of specialists.

The hardest part of being a SLC6A1 family?
The hardest part about being an SLC6A1 mom is the feeling of isolation. I can’t participate in many projects or activities because Everett needs so much attention and support. It’s exhausting finding individuals who are up to the challenge of supporting a child that is severely impacted by his disease.

What are your dreams for Everett?
We wish for Everett to live a happy and meaningful life with less anxiety that is impacting his ability to participate in being part of the community.  We would love for him to expand his world and have friends aside from family members and therapists.

Why would you like people to donate to SLC6A1 Connect?
Donating to SLC6A1 contributes to more research, more trials of new medications, and thus a better life for our child living with this horrific disease. Every dollar counts, and our children are counting on us!!