Growing With Grace- Diagnosis & the 22q Community

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This is my diagnosis story or as I like to call it my journey.

Now I know some of you have heard it before but for the ones that are new here, I’m just gonna share it again. I was diagnosed at the age of two by doing a FISH test. The doctors told my mom that I had Velocardiofacial syndrome (VCFS). But my family and I didn't know there was a new name until I was 20 years old. We only found out more information about the syndrome because I was having more heart issues. With that, I had to get new doctors since I was getting older. My mom and I started looking for doctors around here in the Toledo area, but no one here would take me on. A doctor in Toledo felt uncomfortable taking me in, so they recommended we go to Cleveland Clinic. On December 11, 2018, we saw genetics at the clinic and he told us VCFS is called 22q11.2 deletion syndrome and that there are so many foundations, resources and specialists now. That is something we didn't have in the beginning when I was two years old. The doctor then gave us resources to help us go through this new journey but we also looked online. When we looked online that's where my mom and I realized that everything was geared more towards little kids. Nothing for young adults, so I decided to add in my journey to raise awareness for young adults. So that made me want to do a blog website to show that young adults are just as important and that the syndrome doesn't magically disappear when you get older. While I was doing that I found a foundation that I love, and what they stand for that happens to be the 22q Family Foundation. I saw on Instagram Lindsey, the Executive Director, was wanting people to share their stories of all ages, and I saw my window. I emailed and sent it in that same December. From there I started connecting with more people like me or moms with littles. That helped me reach my goal in that year. Being new to a community like this is scary at first, but everyone is so supportive and welcoming that it makes you feel like family. I’m so amazed by the 22q community and thankful they just took me and my mom in.

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