My sister was able, just two weeks ago, to get a small policy on my nephew with CF, but it is only $25,000 and doesn't cover a death due to illness for the first 2 years. And she had to get the policy bought before he turned 16, which is next month.
I was fortunate enough to have my agent suggest life insurance on my daughter when she was about 8 months old, just in case something were to happen, and she was dx w/CF 6 months later. I signed my second daughters policy prior to her birth, knowing there was a 25% chance she would have CF and my hubby called our agent the day she was born and he sent off her application (along with the policy fee as a 'birth day gift'). She was dx at three weeks old.
I always suggest to friends to get policies on their infants just in case now. I always thought it was morbid to get life insurance on a baby, but now I look at it differently. You just never know what can happen to make someone un-insurable.