Katching Up with Kat
Date: February 26, 2026
My name is Kathleen (Kat) and I was diagnosed with 22Q11.2 Deletion Syndrome 2 weeks after my 42 birthday back in July of 2025. I finally had it pop on the TBX1 gene with a full deletion. It was then confirmed with the chromosomal micro array. I have an older brother and an aunt to two beautiful nieces. I have been with my boyfriend for 8 years and we love going to new places to explore, take photos and learn about different cultures. I love 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 since, 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 knew that as and adult I would probably be in a bit of a minority, and I was right. It is a struggle to find support groups for the 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. We talked for over an hour and she put me in contact with a few people. After that I began my journey of accepting my diagnosis. Realizing what it means for me medically, and for my future. I have learned in speaking with several doctors that I shouldn’t have lived past 25. But I must have been doing something right to make it two decades longer than I should have. Hearing that from several people has triggered something in my brain. I have the desire to want to help others in their journeys. Rather it be other adults or young adults. 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 differently. While our lives and paths are different from the normal child, each version of 22Q presents itself different. It can be hard, especially if a child is nonverbal, to figure out what they need or want. I’ve been there: I’ve done the things, I’ve lived the things, 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