The Bourg Family

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How old was Connor when he was diagnosed with 22q? - Connor (now 6) was almost 2 years old when he was diagnosed.

How has 22q changed your family for the better? - Since Connor was diagnosed, we have grown closer as a family.  Our priorities have changed a lot and we don't take things for granted like we did before.  We've come to realize some things just aren't important and we don't really sweat the small stuff.  Every accomplishment is celebrated no matter how insignificant it may seem.  We've also become more compassionate and understanding of not only Connor's struggles, but the struggles of others.

What is Connor's greatest challenge with this diagnosis? - Connor's greatest challenge is overcoming his speech delay.  Due to velo-pharyngeal dysfunction and his palatal structure, it is extremely hard/impossible for him to make most sounds.  He has been in speech therapy since he was two and recently had velo-pharyngeal flap surgery.  We are optimistic that with continued speech therapy, he will make great strides in the coming months!

What is Connor's greatest accomplishment? - He's probably going to kill me for this one when he is older and reads this, but potty training has been a huge obstacle Connor has recently overcome.  One day it just clicked and he hasn't looked back!

What one thing do you need most from the 22q community and/or our foundation? - Resources for families and education for the community!  There is so much misinformation about 22q.  Families need to be equipped with the appropriate resources and information to navigate doctor's visits, therapy sessions and educational goals.

What is something that you enjoy about being part of the 22q community? - I love that I have "family" all over the world.  We may deal with a variety of symptoms from the deletion, but we come together and cheer one another on.  I know my 22q family feels just as much pride when Connor accomplishes something as I do and I feel the same about their children.  Some of my best friends have been gained through the 22q community.  I have also been afforded many opportunities since joining this family.  I have been able to speak to my state senators and representatives to help pass legislations surround 22q education (Thanks Joy!).  I was also able to join a team of 11 other wonderful people to raise awarness and funds for 22q by running a 200-ish mile relay (Thanks Katie!).  These are things I would have never considered before.

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