The Griffiths Family
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How old was Adell when she was diagnosed with 22q? - She was 6 1/2 months old.
How has 22q changed your life for the better? - Having a child with 22q has helped me and my husband, Peter, be much more understanding about other families. Before having Adell, it was so easy to be judgemental, but now it is easy to be more accepting of differences and challenges in other families.
What is your greatest challenge with this diagnosis? - For me, it was getting over the expectations you have for your child as to what you think they can accomplish. Every parent has to do it eventually as their child grows and evolves, but having to give it up early was a huge challenge. I always had a dream that my child would be smart. Doctors told us when she was diagnosed that she would be mentally retarded. But now, seeing her and what she has accomplished is amazing. I've had to step back and let her be a kid.
What is Adell's biggest accomplishment? - For Adell, her biggest accomplishments are things that make her proud. She thinks it is cool to ride her balance bike and how she learned how to pump her legs on the swing. Those are big accomplishments to her. As parents, it has been watching her evolve on a social level. She has started talking to other kids at school and using "friend" to describe them. In the past, she only referred to one child she knew as a friend, but now she is understanding what the term means. Adell can be chatty, but she's shy and has some anxiety. It has been great watching her handle the transition to preschool and making friends more easily. She is also starting to write and recognize words. These are all huge accomplishments for her.
What one thing do you need most from the 22q community and/or our foundation? - The best thing we could use is support groups where we see people face to face. There are a bunch of families I know of in the area where I live, but I never get around to organizing something. Having organized events would be very helpful and beneficial to my family.
Anything else you'd like to share? - There is a huge disconnect between the medical community and the families. When Adell was diagnosed, we were called and told the results over the phone. The doctor called to confirm our results that she had "VCFS" and said we would be connected with a genetics counselor. It would have been great to be immediately connected with a mentor family. I worry about the families that have barriers that make it challenging for them to get the resources they need with a diagnosis like 22q. Whether it be a language barrier, financial barrier, or cultural barrier, there needs to be a better connection between the medical professionals and families to bridge the gap.