Brian, I'm so sorry that your parents didn't understand what you were going through. I can only imagine how frustrating and scary that must've been for you. I'm sure you know that it's incredibly abnormal for someone at your age to be diagnosed with CLE. My son has it and it was discovered at 5 weeks of age. Of course, he couldn't communicate his needs either, so by the time we realized there was an issue, he was in severe respiratory distress. We ended up being sent on an emergency flight for surgery in Dallas, TX, since our small hospital couldn't perform the surgery. Thanks for sharing your story. It was interesting to us to hear an adult's perspective of what our tiny baby just went through.
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