The Coates Family

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How old was Rachel when she was diagnosed? - Rachel was 6 months old and it was just after having a large VSD repair.  It was almost an afterthought, one doctor just happened to ask if she had a FISH test.  I wasn't sure what that was, but they ordered it and it came back as VCFS.

How has 22q changed your family for the better? - Wow, this is a tough question.  I don't know if it's better or not, seeing that I don't know life any other way.  I can say that before I had my daughter, I would worry about the tiny things and get stressed out easily.  But seeing all the health obstacles she had to endure in her life (especially as an infant), really put life in a whole new perspective for me.  I realized that some things are just not worth the effort to be worried about and I learned to focus on what I could control, what I could fight for, and what I should be stressed about instead.

What was your child's biggest challenge during infancy/now at age 18? - The first biggest challenge was getting her well after being in critical care for many months.  We were fortunate to have a great infant and toddler program here in our county.  As far as now at age 18, from her perspective the biggest challenge is not being able to go to college like her friends.  From my perspective, it is having no other educational option but to remain in the same high school, repeating 12th grade again until she turns 21.  She will be doing the same things as the year before, and possibly not gaining additional tools to become more independent.  As a parent it worries me what she will be able to handle as an adult.

Overall, what other challenges does Rachel face? - Her other challenge is actually her "passion": her music/iPhone/iPod.  She is so in tune with music and loves listening to it, and is able to memorize songs at the drop of a hat.  But because of this passion, she can't always let go of it to enjoy other things.  She can often ruin her own and others' fun by obsessing about if the music is fully charged, will she have time later to listen to it when we get home, or cry when we ask her to stop playing it.  Sometimes her music will be the first thing that needs to be in her hands when she wakes up and has to be the first thing she gets when we come home from school.

What is Rachel's biggest accomplishment? - She has had many, but the one that stands out the most is her being a lifelong Girl Scout and earning the highest award within the scouts, the Gold Award.  She created a wonderful PSA advocating for herself about 22q and sharing information to help others learn more about the disorder so that they have more opportunities than she had growing up.  She hopes that others will always share her video and keep the conversation going for years to come. (See the video here!)

What one thing do you need most from the 22q community and/or our foundation? - For us, I think grabbing onto what things our kids do, and continue to reshare them with others.  Also, help us reach farther than our own arms and help advocate for those whose voice may not be strong enough.  I also enjoy being able to connect with people from all over and to share stories about our highs and lows.  I also enjoy being able to get advice and share advice.

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