Katching Up with Kat
Date: February 26, 2026
I feel like we are the forgotten demographic and the most under-supported. My goal now is to change that, so I am stepping forward as an adult volunteer.
My name is Kathleen (aka Kat), and I was diagnosed with 22q11.2 Deletion Syndrome two weeks after my 42nd birthday back in July of 2025. I finally had it pop up on the TBX1 gene as a full deletion. It was then confirmed with the chromosomal microarray.
A little about me: I have an older brother, and I’m an aunt to two beautiful girls. I have also been with my boyfriend for 8 years now! We love going to new places to explore, take photos and learn about different cultures. My hobbies include diamond art, board games, and micro photography.
I have learned a lot about myself since being diagnosed with 22q deletion syndrome. Things that I have struggled with for most of my life are finally making sense, and I am finally getting the tools I need to learn how to deal with those challenges even as an adult. Once I got my diagnosis, I jumped online and started searching for my community that I knew had to be there.
I had a hunch that as an adult, I would probably be in a bit of the minority. And I was right—it’s a struggle to find support groups as a single individual with no children. I feel like we are the forgotten demographic and the most under-supported. My goal now is to change that, so I am stepping forward as an adult volunteer.
I reached out to the 22q Family Foundation on Tik ToK and found Lindsey (the 22q Foundation’s Executive Director). We talked for over an hour, and she was able to put me in contact with a few others in the 22q community. That’s when I began the journey of accepting my diagnosis and realizing what it means for me medically, and for my future. Several doctors have told me that I shouldn’t have lived past 25—but I must have done something right, because I’ve now made it nearly two decades longer!
Learning this triggered something in my brain—I now have such an overwhelming desire to support others in their 22q journeys, whether it be other adults my age or younger people in the community.
Because here’s the truth: we live, we love, and I promise you we love HARD. We learn and can thrive just like everyone else does, even if it looks a bit different. While our lives and paths are different from the typical child, each version of 22q presents in a unique way.
It can be hard, especially if a child is nonverbal, to figure out what they need or want, but I want to help others navigate it. Because I’ve been there: I’ve done the things, I’ve lived the things, and I’ve loved the things. Now, my goal is to try and help others while exploring my own 22q journey.
My quest for answers is just beginning. Through Lindsey and the 22q Family Foundation, I also found another support group and have made several other adult friends and mom friends that have become my extended family. I am extremely grateful to Lindsey and the Foundation for giving me this opportunity to volunteer within the community. Community is extremely important to me, and I look forward to getting to meet more of you along the way.
Toodles for now,
Kat