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How old were you when you were diagnosed with 22q? - I was 10 years old when we got the diagnosis. My parents were worried about me not meeting milestones and knowing I was different - it took a lot of different doctors and testing to finally having genetic testing done. Once the tests showed I had 22q I found out that I had a PDA (patent ductus arteriosis of the heart) that required surgery to fix, and thyroid problems as well.
How has 22q changed your family for the better? - Being diagnosed with 22q has changed my family for the better by bringing us even closer. It has been a journey we have all gone through together. It has made us more aware of others with all different kinds of disabilities and we are more sensitive to other peoples differences or special needs. My older sister became a special education teacher because of me and my younger sister is going to be a counselor for kids - she is hoping to work with kids with intellectual disabilities. If they did not grow up with a sibling who had 22q they may not have made those career choices.
What is your greatest challenge with this diagnosis? - I have social anxiety and that is a big challenge but seems to be getting better as I am getting older. The BIGGEST challenge I still deal with is math - anything to do with numbers really. I have a hard time doing even simple math, telling time, understanding temperature. Its more than "just math". We all use numbers everyday.... counting money - giving money/receiving change - number one biggest challenge, right there. also reading a clock/watch - using a stove or oven - setting a thermostat - knowing what clothing is appropriate for the forecasted weather - these are all big challenges for me EVERYDAY but I continue to keep trying to understand.
What is your biggest accomplishment? - My biggest accomplishment was being accepted into the "College Experience Program" at St. Rose in Albany. It is a program for young adults with intellectual disabilities to make us independent. I am living in an apartment, interning at a job, getting around the city using public transportation. It has been life-changing for me. I am doing the same things that my 2 sisters have done! It is the thing I am most proud of!
What one thing do you need most from the 22q community and/or our foundation? - Support! I want the foundation to keep spreading awareness so that everyone understands what 22q is. I also hope that there is more information about (adults) with 22q. I participated in a case study at the Children's Hospital of Philadelphia for that reason. There is not a lot of information out there about what happens to the baby that is diagnosed and not meeting the typical milestones after they are grown.
What one thing do you enjoy most about being a part of the 22q community? - The support! I also love that my blog and music video have had so much positive feedback. It makes me feel great to know that people see them and email to tell me that they were so sad to have their child get diagnosed because they thought that their lives would not be so good, but then they read/saw something from me and I gave them hope. They know there is hope and that makes me feel great! I love to advocate for those with 22q and other disabilities.
Check out Amy's amazing parody of Taylor Swift's 22..."22q" here!
If you'd like to get in touch with Amy, you can do so here: