CHARGE Syndrome Info - Kennedy

Click for a message from Kennedy!

A Little Bit of History

Hi everyone, my name is Kennedy. I was born on January 27th, 1998 at the Saint John Regional Hospital at 6:59am. I weighed in at 7 lbs 14 oz. I didn't give my mommy a hard time at all when I was getting here, making things MUCH easier on my dad, too!

Kennedy at about 1 week of age,
breathing through an oral airway.

It was easy getting here; however, it was hard to breathe as soon as I got out and the doctors discovered that my airway in my nose didn't open up right when I was inside of my mommy. This is called "bilateral choanal atresia". For the first seven weeks of my life, I used an oral airway to breathe with. My daddy thought of a really neat way to tie the airway around my head so that I didn't have to have tape all over my face(if anyone seeing or reading this would like to know how we tied up the airway, feel free to email us!). The atresia is sometimes a sign of some other things, and through a series of tests, the doctors discovered that I had CHARGE syndrome.

I have been through many surgeries and lots of therapy but I am one of the happiest kids you'll ever meet.  I love to sing & act. I am going into grade six at public school (middle school - yikes!) and I do most of the regular curriculum with some modifications in math and language arts. I sing in my school choir and I participate in weekly lunch time intramurals at school.    I am a member of a local children's theatre company and have been in several productions.  I go to weekly classes and theatre camp each summer. I am also going into my fourth year of bowling in a local youth league.  I love chatting on MSN, going on Facebook and enjoy going to the trailer in the summertime.