CHARLIERetrun to 22q Stories
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The moment our first son, Charlie, was born we were almost instantly puzzled. He was almost 2 weeks early, just 5 lbs and he failed his newborn hearing screening. He also had funny looking ears! But, we were told he was fine and we quickly settled into life with a baby. I had difficulty feeding him (knowing now he didn’t have a good suckle) but otherwise everything seemed normal to us as first time parents. As Charlie got older, he always hit milestones just outside the normal range and his hearing loss and little size remained constant. He also constantly got colds and illnesses. When his speech failed to improve at 3 1/2, I broke down and decided try and get some help – even though everyone including his doctor told us he was fine. Well, right after he turned 4 we were lucky enough to see a speech pathologist here in Phoenix who knew instantly Charlie had 22q11.2. We confirmed via FISH test and the official positive results were both devastating and relieving. Nothing made me (his mom) feel worse than thinking something was ‘wrong’ when no one else did. By this time, we had already pushed to get Charlie early intervention services through his school district and the state. We continue these services today! Now 9 1/2 years old, Charlie is doing great! While we don’t have a lot of the medical issues so many kiddos deal with – we are dealing with the educational and behavioral issues that can arise. Charlie participated in UC DAVIS MIND institute’s studies last summer which was AWESOME! Charlie is mainstreamed into our neighborhood school in a regular classroom with interventions and an aide. He will be in the fourth grade this fall. We are lucky to have such great services! As you can see Charlie plays little league baseball in our neighborhood, loves video games and is absolutely the sweetest boy ever!