This post is written by my sister Emily (the beautiful bride below). This post shows not only how amazing and special she and her husband are, but also how much a rare disease can impact the extended family. This narrative was originally posted on http://potteryblog.com
xo nora
****
This post is a very personal one. It’s [...]
One thing that having a chronic condition does is make you grow up quickly. When Ayrie is in the hospital he is as composed and mature as an adult. He may have been throwing tantrums the day before but the minute we board that plane to fly for Boston he is the epitome of good [...]
Ayrie looking at the Charles River out his hospital room window
Hello everyone. As you may have read, I started this blog because of the experiences I have had over the last two years since my son was diagnosed with the rare disease Juvenile-onset recurrent respiratory papillomatosis (JORRP). We currently fly to Boston for surgery because I learned, [...]
