(posted November 2, 2023)
Hi! My name is Clara Von Feldt, and I grew up with 22q deletion syndrome also known as velo-cardio facial syndrome. I was born and raised in Minnetonka, Minnesota and I am currently 22 years old. Overall, I had a very happy childhood. My parents made it a goal for me to be able to succeed as an adult from the moment I was diagnosed with 22q. They allowed me to be “normal” (even though we don’t really know what to consider as “normal”). My family includes 3 sisters, 2 pups, my mom and dad, plus a large extended family. Having a big family really helped me increase my social and emotional skills! My mom and dad were my biggest cheerleaders throughout my 22q affiliated life. They were the most supportive people when it came to school/sports/friendships. I could always come back to them and ask for help and encouragement. The only trouble I had was being compared to my siblings where my parents would say “oh you’re not ready for that”, and “maybe next time/year”. This made me feel frustrated and I started some activities at a slower pace than I wanted to. All in all, I had a great upbringing while living with 22q deletion syndrome.
I was diagnosed with 22q at 6 weeks of age when I was in the hospital for failure to thrive due to issues with my ability to take in an adequate amount of calories. While at the hospital they discovered that I only had one kidney and I had a hole in my heart (which eventually closed). Due to my feeding issues, I had a feeding tube until around nine months. My main health issues have been related to my ears. I have had recurring ear infections, and my hearing was continuing to decline. Recently I had my left eardrum reconstructed and that has been a very exciting change! As a result of such an early diagnosis, I was able to receive therapy in areas such as speech, occupational and physical therapy from a very young age. I believe this made a big difference in who I am today.
Along with my 22q diagnosis I have learning disabilities which affects my time in school greatly. As long as I can remember I’ve had an IEP (Individualized Education Plan) which has helped me enormously even today! The only hard thing about having 22q and being in school was worrying what my peers thought about me. I went to a great school which had lots of disability services. My accommodations were extra help (para) in classrooms, extended time on tests, extended time on assignments, note cards for exams, limited questions on homework and some extra help in specific subjects. Being a student in special education made things harder for me to make friends. I did get bullied (I won’t lie about that) but being in a school where bullying was taken seriously and where when I talked to a teacher about it, it stopped, helped a lot. Overall school was a positive experience for me, and I encourage all families to have their children go to a school that has the resources needed for your child with 22q differences!
Well to start off there are little accomplishments I had like the milestones’ children have (crawling, walking, talking etc..) and I passed everyone with flying colors! But I would have to say my biggest accomplishment was to graduate from high school, it was 12 years of dedication and hard work. I also received a few college scholarships through my high school, which was a real honor. I was very fixated on getting a job, so after convincing my parents I was ready, I started working at a local grocery store at the age of 14. It was during this time that I realized my true love was working with children and that is what I have done ever since. I also enjoy music and have been playing the piano for about 15 years. For a long time, I was self-conscious about my voice, so a few years ago I started taking voice lessons and singing in front of an audience. It has been both challenging and rewarding and has given me a lot more confidence. I also have a passion for theatre and have been in a few plays as well as a part of many costume crews.
If a doctor says it, doesn’t mean it’s true! Prove them wrong. You can do so much more than what they are telling you. Believe in your dreams and pursue them! My mom was once told by a physical therapist that I would never be able to walk or talk but here I am today doing so much more. Yes, doctors know a lot but there’s also a lot they don’t know as well!
My plan for the future is to become a 1st/2nd grade teacher because I love working with kids due to the way it makes me feel inside! It brings me so much joy to know that I CAN be the person who helps a child become someone in this world no matter who they are. I would also like the opportunity to raise a family with a romantic soulmate!
I am in college now finishing up my junior year. College has been a struggle so far due to the fact I graduated from high school during the peak of COVID. One thing that has helped me find success in college has been working with the school’s student accessibility services. Some professors in college don’t understand why students with disabilities need extra help, so it’s great to get support from the people that do understand the struggles disabled people go through with learning. It has been hard to make friends with my social skills not being 100% (but who has social skills at 100% – no one that I know of). I have a close group of friends that I hang out with, and we’ve known each other since elementary school but I have had a hard time expanding beyond that group and making new friends. I keep getting involved in things I love, and I know that is how I will grow my circle.