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I was diagnosed with 22q at the age of two, but we knew it as Velocardiofacial (VCF). Over this past year my family and I have discovered so much about it, like a new name and all the possible symptoms that can come with 22q deletion syndrome. I have had seven ear surgeries and one open heart surgery, cleft palate surgery, a colonoscopy and reversal colonoscopy. I currently have fluctuating hearing loss. I am developmentally delayed, have a speech impediment, and problems with memory
Even though I had a lot going on in my life I still have managed to accomplish a lot of great things. I have done some amazing things like, I have graduated with not just one but two diplomas. One was with my High School and the other is a vocational school where I studied floral design/ greenhouse. I also was a part of FFA (Future Farmers of America). I have a small floral shop at my home just for family and friends and to keep up my skills with weddings and floral designs.
It might seem like I have everything figured out, but I still often struggle daily. I have anxiety, depression, heart problems, I also have a low immune system and arthritis. These are the hard things about 22q. I have good and bad days but I have learned " That you can be down for a moment , you just can't live there." That's what my Mom has taught me my whole life.
Yet with all this going on I'm still proud to be part of the 22q11.2 family. I love being a part of this community because my family and I have more resources since I was diagnosed. When I was diagnosed there wasn't a lot of help or answers. I also love that I have a way to connect with others that are like me. Another thing I'm grateful for is that everyone is so welcoming and the atmosphere in the group is full of understanding. We are all the same, but yet so different. It's a way for me to see that I have a better outlook for my future. Just seeing people succeed in life and awareness is why I love this community! I love my story because without it I wouldn't be who I am today and why I'm still standing! I have no shame to tell my life story and wear it on my sleeve proudly.
This is my Journey and I love it!
If you want to know more feel free to check out my blog where I write sometimes about my life and or go to my Instagram.
Here's the links: