This morning we had brunch with a remarkable family. Their daughter also has XP/TTD. This is the first time in their lives that either young lady has met someone with this diagnosis. It’s not surprising…the NIH has had fewer than 10 cases, and these two are among the oldest young women identified.
Although they have some differences in medical condition, they are extremely similar in their sweet (and sorta goofy) personalities. They also share a love for movies, and spent a good chunk of time quoting favorite lines. Both have a similar very witty sense of humor. And, since both have been through the NIH gauntlet, they had plenty to share about that as well.
The parents and siblings also had a good time comparing and contrasting stories – and finding out that our outlooks are similar. We are all balancing enjoying life in all its fullness with the necessary restrictions of having a serious health condition.
So great to be able to share all that ~ but mostly just great to make new friends!